Infrastructure and Services - Trust and Transparency
Lead Research Organisation:
Health Data Research UK
Department Name: UNLISTED
Abstract
HDR UK’s mission, to enable research that improves people’s lives, needs patients and the public to have confidence that their data is being used in safe and trustworthy ways. This programme enables the public to shape HDR UK’s work, demonstrating accountability, transparency and showing that research answers questions that are important to patients and the public.
By working with the public to understand their perspective on and shape research programmes HDR UK can build confidence in the way patient data is being used for research, ensuring the new tools and infrastructure developed is founded on public trust. This can bring together the needs of research and patients, in a way that benefits everyone.
By working with the public to understand their perspective on and shape research programmes HDR UK can build confidence in the way patient data is being used for research, ensuring the new tools and infrastructure developed is founded on public trust. This can bring together the needs of research and patients, in a way that benefits everyone.
Technical Summary
This work is funded by the UKRI Medical Research Council, UKRI Engineering and Physical Sciences Research Council, UKRI Economic and Social Research Council, Department of Health and Social Care, National Institute for Health Research (England), Chief Scientist Office (Scottish Government), Health and Care Research Wales, Public Health Agency HSC (Northern Ireland), British Heart Foundation and Cancer Research UK
To deliver HDR UK’s mission to enable data-driven research that improves people’s lives, patients and the public need to have trust and confidence in the safe, secure and trustworthy access to and use of their data. Ideally, patients will actively want their data to be used for research that improves and saves lives. However, the public response to the GP Data for Planning and Research (GPDPR) programme and rate of national data opt-outs demonstrates that members of the public have concerns about use of their data for purposes beyond their direct care. Demonstrating trustworthiness and building public confidence on a national scale in a complex data landscape is challenging but vital in order for the UK to achieve the potential of future research. To support this, HDR UK is committed to leading both meaningful involvement and engagement with the public and a robust, transparent, trustworthy and streamlined governance and ethics framework. These components will be co-delivered under the Trust and Transparency pillar.
Evidence has shown that active and meaningful patient and public involvement and engagement (PPIE) leads to more relevant and higher quality research studies. PPIE is particularly crucial in health data research to enable the sector to demonstrate a trustworthy approach to the access and use of data to patients, the public and practitioners. The ability to demonstrate transparent and robust data governance and ethics frameworks, built with meaningful PPIE, is also crucial to building and maintaining trust in the safe and secure use of data. Together the PPIE and Governance and Ethics workstreams will support data custodians in demonstrating accountability, transparency and trustworthiness and ensuring health data research is relevant, acceptable, appropriate, and answers questions of importance to patients and the public that are of public benefit.
Impact and legacy
By 2028, the vision for the Trust and Transparency pillar is for patients and the public to have trust and confidence in the safe, secure and trustworthy access to and use of their data in research.
To deliver HDR UK’s mission to enable data-driven research that improves people’s lives, patients and the public need to have trust and confidence in the safe, secure and trustworthy access to and use of their data. Ideally, patients will actively want their data to be used for research that improves and saves lives. However, the public response to the GP Data for Planning and Research (GPDPR) programme and rate of national data opt-outs demonstrates that members of the public have concerns about use of their data for purposes beyond their direct care. Demonstrating trustworthiness and building public confidence on a national scale in a complex data landscape is challenging but vital in order for the UK to achieve the potential of future research. To support this, HDR UK is committed to leading both meaningful involvement and engagement with the public and a robust, transparent, trustworthy and streamlined governance and ethics framework. These components will be co-delivered under the Trust and Transparency pillar.
Evidence has shown that active and meaningful patient and public involvement and engagement (PPIE) leads to more relevant and higher quality research studies. PPIE is particularly crucial in health data research to enable the sector to demonstrate a trustworthy approach to the access and use of data to patients, the public and practitioners. The ability to demonstrate transparent and robust data governance and ethics frameworks, built with meaningful PPIE, is also crucial to building and maintaining trust in the safe and secure use of data. Together the PPIE and Governance and Ethics workstreams will support data custodians in demonstrating accountability, transparency and trustworthiness and ensuring health data research is relevant, acceptable, appropriate, and answers questions of importance to patients and the public that are of public benefit.
Impact and legacy
By 2028, the vision for the Trust and Transparency pillar is for patients and the public to have trust and confidence in the safe, secure and trustworthy access to and use of their data in research.
Publications
Brophy R
(2024)
Towards standardised cross-sectoral agreements for data depositing and data access in Trusted Research Environments: streamlined contracting to advance public benefit research.
in International Journal of Population Data Science
Update Health Data Research UK
(2024)
Update Health Data Research UK responds to draft Transparency in Health and Social Care guidance consultation
| Description | Public Involvement in Briefing for the Office of Life Sciences |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Description | Public Involvement in the NHS England 10-Year Health Plan |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| URL | https://www.england.nhs.uk/long-term-plan/ |
| Description | NHS Secure Data Environment (SDE) Network Partnership |
| Organisation | NHS England |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Collaboration with the https://digital.nhs.uk/data-and-information/research-powered-by-data/sde-network to provide software to support their network. Regular meetings to collaborate with them |
| Collaborator Contribution | Attendance at regular meetings. Shared communications and events to promote the software and partnership. |
| Impact | Input in to SDE Network policy documents Reduction in complexity for researchers working across the UK - streamlining and standardising processes |
| Start Year | 2023 |
| Description | Shared Commitment to Public Involvement - Public Advisory Board |
| Organisation | NHS Health Research Authority |
| Country | United Kingdom |
| Sector | Public |
| PI Contribution | Involvement of Public Advisory Board members in initiative plans, meetings, and activities. |
| Collaborator Contribution | The Health Research Authority and the National Institute for Health and Care Research provide support and secretariat services for regular meetings of organisations across the UK that have joined the initiative. These organisations have been collaborating to drive improvements that will enhance standards in health and social care research. |
| Impact | Overview of impact: - Increased collaboration with HRA, NIHR, and other key stakeholders - Increased participation in national-wide projects and social media communications - Increased understanding of HDR UK's PPIE team plans and initiatives - Public members involved have been reimbursed for their involvement in any activity |
| Start Year | 2023 |
| Description | 1-year PEDRI Event |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The PEDRI team organised an event at the Wellcome Trust in London to celebrate the achievements of the first year and define next steps. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.pedri.org.uk/ |
| Description | 2 Royal Avenue - NI Science Festival |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Jigsaw workshop set-up. Participants receive a data piece and need to draw a representation of it on a jigsaw piece. The compelted piece gets added to our data jigsaw to link up the data. 25 people attended |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://nisciencefestival.com/ |
| Description | 5 Safes Action Force meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | There were a series of meeting in April, May and July 2023, where HDRUK gathered the 5 safes action force to discuss the main actions to be taken forward by the group and its outputs. We also used these meetings to work through how each organisation would be involved. Also to gain advice on their application forms/process |
| Year(s) Of Engagement Activity | 2023 |
| Description | 5 Year Plan Refresh - CON, GOV, ONS, INF |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To review and discuss a 5 year plan refresh, part of work ongoing |
| Year(s) Of Engagement Activity | 2024 |
| Description | Alliance Transparency Standards Showcase |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Provided an opportunity for alliance members to see impact of transparency standards funding call |
| Year(s) Of Engagement Activity | 2024 |
| Description | April Bi-weekly bulletin for members of the Public Advisory Board |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 16 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. The bulletin is also sent to HDR UK Senior Leadership Team (SLT) members and members of HDR UK via email and Slack channels. As a result of this bulletin, here is an overview of the impact: - 5 people replied, thanking me for the update and highlighting the value of receiving the bulletin bi-weekly - 5 people volunteered to be involved in the review of the newly developed PPIE Honoraria and Expenses Policy - 5 people volunteered to be involved in Prioritising Science Festivals - Increased awareness of PAB and related activities among SLT members, with 2 asking for clarifications. |
| Year(s) Of Engagement Activity | 2023 |
| Description | August Sudlow Review Workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Public members were invited to contribute to The Sudlow Review. Here is an overview of the impact: - Encouraged HDR UK team reflection on the development of accessibility guidance for future remote activities - All attendees were offered £50, affecting HDR UK budget - Insights from breakout sessions will inform The Sudlow review. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/helping-with-health-data/the-sudlow-review/ |
| Description | BHF DSPT review and discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To discuss the requirements for the DSPT and how to approach each response in terms of evidence needed. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Bi-weekly HDR UK Voices professional Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Bi-weekly HDR UK Voices Bulletin updates our PPIE partners on opportunities for their public members to get involved. In addition it lets them know about any PPIE professional news relevant to them. 31 people are signed up |
| Year(s) Of Engagement Activity | 2023,2024 |
| Description | Black Internship Programme Closing Ceremony |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Undergraduate students |
| Results and Impact | Public Advisory Board (PAB) members were invited to the Black Internship Programme Closing Ceremony to celebrate interns and judge their poster presentations. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Co-authoring Journal Article |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Public Advisory Board (PAB) members included in the Trusted Research Environment Toolkit development in February were invited to co-author a journal article, including their feedback and discussing the value of PPIE in health data science. As a result of this activity: - the content of the paper was edited; - 2 PAB members volunteered to contribute to the narrative of the article, receiving a £50 honorarium and becoming co-author of the paper. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://ijpds.org/article/view/2169 |
| Description | Cohort Discovery |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | To review papers created for public advisory board review and to include new components and examples of what currently exists in regards to the Gateway. Which will be presented to public advisory board in March |
| Year(s) Of Engagement Activity | 2024 |
| Description | DSIT & UKRI: data access strategy & our future work together |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussing and reviewing future data access strategy |
| Year(s) Of Engagement Activity | 2024 |
| Description | Data Access Agreement template presentation at IPDLN conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | To present the Data Access Agreement template to data science professionals |
| Year(s) Of Engagement Activity | 2024 |
| Description | Data Access Policy and Delivery Forum |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Shared five safes data access form template and discussed future collaboration |
| Year(s) Of Engagement Activity | 2024 |
| Description | Data Sharing and Linkage discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To discuss on going work with data sharing and linkage |
| Year(s) Of Engagement Activity | 2024 |
| Description | Datamind/UK LLC catch up |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To understand more on their projects which both organistions submitted for the Transparency funding call |
| Year(s) Of Engagement Activity | 2024 |
| Description | EMRI Group Meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | Aims: Raise awareness of HDR UK Identify oportunities for partnership Raise awareness of, and seek input into our PPIE strategy" Over 30 PPIE professionals attended the meeting. 1 person interested in seeing our PPIE strategy and providing feedback |
| Year(s) Of Engagement Activity | 2023 |
| Description | ESRC SDR UK strategic advice team: ethics and legal |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Reviewing and discussing strategic legal and ethical advice with SDR UK |
| Year(s) Of Engagement Activity | 2024 |
| Description | Equality Diversity and Inclusion HDR UK Plans |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Public Advisory Board members were involved in informing the development of the HDR UK Equality Diversity and Inclusion strategy and plans. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Four Nations Contract Leads meeting |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Discussion on development and adoption of the DAA template by HRA/NHS. |
| Year(s) Of Engagement Activity | 2024 |
| Description | GA4GH and HDR UK - show & tell |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Introductory meeting to share some of the gateway outputs and assess what each group can learn from one another. [international] |
| Year(s) Of Engagement Activity | 2023 |
| Description | GUARD principles workshop |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | To co-develop the GUARD principles |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK 2023-2028 PPIE Strategy |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Since the last Research Fish submission, a series of activities have taken place involving public members and PPIE leads from across the health and care sector to inform the HDR UK 2023-2028 PPIE Strategy. These activities, led by HDR UK staff and Stand, the consultancy helping on this work, have resulted in the following impact: - Co-development of a survey for consultation and involvement in report published online. - Involvement of Public Advisory Board members in shaping delivery plans. - Organisation of two online workshops to update public members and PPIE leads involved by Stand on progress and gather final feedback. - Consistent reimbursement for public members' contributions. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.hdruk.ac.uk/about-us/involving-and-engaging-patients-and-the-public/get-involved/help-sh... |
| Description | HDR UK ECR Forum - Science communication workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | Invited to deliver a workshop for ECRs on science communication and public engagement. Overview of impact: - Approx. 20 ECRs attended. - Received positive feedback from organising team. - As a result of our workshop, an ECR approached HDR UK to write a blog. |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK PPIE Event |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The 2024 HDR UK PPIE Event was planned to celebrate the impact of members of the public across the institute, showcasing case studies and providing an opportunity for networking. Here is an overview of impact: - Strengthened the collaboration between PPIE professionals and members of the public across the Institute. - Co-produced an event, which was the result of an ongoing collaboration that counted 6 planning meetings with public members since last Research Fish submission. - Developed an event toolkit. - Informed future plans and activities. - Increased knoweldge and understanding of PPIE across the institute - Encouraged further involvement in PPIE - Increased HDR UK Voices members - Informed future plans - Impacted funds due to reimbursements for public members' involvement and travel expenses, either as part of the planning process or as invited participants at the event. |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Participation in the Broadlands Fun Day |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | The aim was to engage with members of the public of all ages and backgrounds at Broadlands Fun Day in Bridgend, Wales about what health data researchers use health data for. Overview of impact: - 250 members of the public engaged with our activities that were previosuly unknown to HDR UK. - To show inclusiveness, HDR UK Stories banners were translated to Welsh, as well as sparkly stickers (that said "My voice is important" and "Health data saves lives"). - 1 PAB member and 1 HDR UK Voices member received an honorarium for their involvement. |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Stories |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Aimed to: Raise awareness of health data research Encourage involvement in HDR UK Voices Share how the public are making a difference in health data" 502 people have viewed the videos, more have viewed the webpages. Exact impact cannot be determined as reach goes beyond local stats |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/about-us/involving-and-engaging-patients-and-the-public/get-involved/hdr-uk-... |
| Description | HDR UK Voices - 2023 Neuroimaging Symposium |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited public members to attend the 2023 Neuroimaging Symposium 90 opened the newsletter. 19 people clicked the link, suggesting active engagement. It cannot be determined how many eventually registered |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.com/e/neuroimaging-symposium-tickets-692397318017?_hsenc=p2ANqtz-_Bn8T3oUuTPZ... |
| Description | HDR UK Voices - AI Evidence Collection |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to read the new AI evidence collection. 66 opened the newsletter. 23 people clicked the link, suggesting active engagement. It cannot be determined how many eventually registered, though the event did fill capacity. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://evidence.nihr.ac.uk/collection/artificial-intelligence-10-promising-interventions-for-health... |
| Description | HDR UK Voices - AI Workshop |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to attend a public workshop either in-person or online. 97 opened the newsletter. 11 people clicked the link, suggesting active engagement. It cannot be determined how many people registered. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.com/e/ai-risk-evaluation-community-group-public-workshop-online-only-tickets-... |
| Description | HDR UK Voices - Alan Turing AI Workshop |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invitred members of the public to a webiner, heald by the Alan Turing Institute about how AI can help with better prescirpition and medicine optimisation. 74 opened the newsletter. 18 people clicked the link, suggesting active engagement. It cannot be determined how many eventually signed up to the webinar. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.turing.ac.uk/events/potential-ai-help-better-prescribing-and-medicines-optimisation?_hse... |
| Description | HDR UK Voices - Alan Turing Public Engagement Workshop |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invitred members of the public to a webiner, heald by the Alan Turing Institute about engaging the public in data science and health. 72 opened the newsletter. 19 people clicked the link, suggesting active engagement. It cannot be determined how many eventually signed up to the webinar. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.turing.ac.uk/events/public-engagement-data-science-and-health?_hsenc=p2ANqtz--98m1xrVvJA... |
| Description | HDR UK Voices - Alleviate Pain Survey |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to complete a UK national pain survey. 96 opened the newsletter. 27 people clicked the link, suggesting active engagement. It cannot be determined how many people completed the survey. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://dundee.onlinesurveys.ac.uk/ukpainsurvey2023?_hsenc=p2ANqtz-_NtoBUNFuc7GKpX_O8mHZw3pdikzvfNB0... |
| Description | HDR UK Voices - Alleviate Pain Survey |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to complete the Alleviate Pain Survey. 88 opened the newsletter. 15 people clicked the link, suggesting active engagement. It cannot be determined how many people completed the survey. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://dundee.onlinesurveys.ac.uk/ukpainsurvey2023?_hsenc=p2ANqtz-8fdvb3bNZTUxdcwtKvAta9oOa7jBCC5T7... |
| Description | HDR UK Voices - Alliance Webinar |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to attend the Alliance Webinar. 116 opened the newsletter. 29 people clicked the link, suggesting active engagement. It cannot be determined how many signed up. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://forms.office.com/Pages/ResponsePage.aspx?id=saxMhCdwY0Kdihj6pb8IOfqdqwyCup1Nq-ToGV3jbJJUODRC... |
| Description | HDR UK Voices - BHF DSC Public Advisory Group |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to apply to be part of the BHF DSC Public Advisory Group making Clinical and Funding Decisions. 66 opened the newsletter. 11 people clicked the link, suggesting active engagement. It cannot be determined how many eventually registered interest in getting involved in the group. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://acrobat.adobe.com/id/urn:aaid:sc:EU:c68b4f8a-6300-4f6c-9a5d-8dd975d7c4f8?_hsenc=p2ANqtz-8nRL... |
| Description | HDR UK Voices - BHF DSC Wearable Survey |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to complete a survey by the British Heart Foundation Data Science on the use of wearables to track heart health. 63 opened the newsletter. 15 people clicked the link, suggesting active engagement. It cannot be determined how many eventually signed up to the webinar. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.surveymonkey.co.uk/survey-taken?sm=OhAD8Vo_2FRY8D4yuLnfNZ2a_2BbWytcz1nqY2rruSovVov_2BTwG... |
| Description | HDR UK Voices - Be Part of Research addition to NHS website and NHS@75 Survey |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to visit the Be Part of Research pages and take part in a survey about people's views on the NHS over the last 75 years. 69 opened the newsletter. 21 people clicked the links, suggesting active engagement and that some wanted to gain more awareness. It cannot be determined how many eventually took the NHS@75 survey or visited the new 'Be Part of Research' pages |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://bepartofresearch.nihr.ac.uk/?_hsenc=p2ANqtz-89QPRlElei0hv-2fPsHtjwJJrn2u04S81L6Vt8NRshArOURR... |
| Description | HDR UK Voices - Best Practice Standards Survey |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to complete a survey to understand what they thought of the suggested Best Practice Standards 64 opened the newsletter. 16 people clicked the link, suggesting active engagement. It cannot be determined how many eventually completed the survey |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.surveymonkey.co.uk/r/RZJWQF8?_hsmi=259850838&_hsenc=p2ANqtz--UsoiUtGBQMeUaFwzq30lzxaB78K... |
| Description | HDR UK Voices - CRUK Opportunities |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter informed people about several CRUK events they could get involved with. 95 opened the newsletter. 31 people clicked the link, suggesting active engagement. It cannot be determined how many registered to get involved |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.cancerresearchuk.org/get-involved/patient-involvement/involvement-opportunities?_hsenc=p... |
| Description | HDR UK Voices - Covid-19 Research Update |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to read about HDR UK's latest Covid-19 research. 106 opened the newsletter. 24 people clicked the link, suggesting active engagement. It cannot be determined how many people read the article. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.hdruk.ac.uk/news/first-whole-uk-population-study-reveals-impact-of-covid-19-under-vaccin... |
| Description | HDR UK Voices - DARE UK Community Group Webinars |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to attend the DARE UK Community Group Webinar 71 opened the newsletter. 14 people clicked the link, suggesting active engagement. It cannot be determined how many eventually registered to attend the webinar |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/breaking-barriers-building-community-exploring-dare-uk-community-grou... |
| Description | HDR UK Voices - DARE UK Insights Webinar |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to attend a DARE UK Insights Webinar. 102 opened the newsletter. 20 people clicked the link, suggesting active engagement. It cannot be determined how many registered to join the webinar. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/linking-sensitive-data-insights-from-the-dare-uk-driver-projects-tick... |
| Description | HDR UK Voices - DARE UK Workshop |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to register for a DARE UK workshop on public friendly resources. 72 opened the newsletter. 34 people clicked the link, suggesting active engagement. It cannot be determined how many eventually registered interest |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://doodle.com/meeting/participate/id/avZL8P8a?_hsenc=p2ANqtz--pGVMieqcdsxeYsPcw_qqRk-Yh5x5AOdzM... |
| Description | HDR UK Voices - Data Protection Survey |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter let people know about a Data Protection Survey, led by UK LLC. 106 opened the newsletter. 45 people clicked the link, suggesting active engagement. It cannot be determined how many people completed the survey. |
| Year(s) Of Engagement Activity | 2023,2024 |
| URL | https://forms.office.com/pages/responsepage.aspx?id=sAafLmkWiUWHiRCgaTTcYUjcBRRUtnxJgWRdq6s_hAlUNUc1... |
| Description | HDR UK Voices - Diagnostics Survey |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to complete a diagnostics survey. 76 opened the newsletter. 14 people clicked the link, suggesting active engagement. It cannot be determined how many people completed the survey. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.surveymonkey.com/r/Roch1?_hsenc=p2ANqtz-865-1rDjDnNqN00D2x_WOdF0dTQaQQFTJXiKRajrhCROEUIB... |
| Description | HDR UK Voices - Diagnostics survey reminder. |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to complete the Patients Association diagnostics survey. 84 opened the newsletter. 15 people clicked the link, suggesting active engagement. It cannot be determined how many people applied. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.surveymonkey.com/r/Roch1?_hsenc=p2ANqtz-9ZJEEbH2_pVQaZlcOPiWVdoNl6QQudFut2yk10XEGXwFYQV0... |
| Description | HDR UK Voices - Digital Health Survey |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to complete a digital health survey. 83 opened the newsletter. 17 people clicked the link, suggesting active engagement. It cannot be determined how many people completed the survey. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://digitalheartpsp.napier.ac.uk/survey-1/?_hsenc=p2ANqtz-84KBWTsv8hXqFYmEPqs-qvHXC9CzB5NO3gl2q-... |
| Description | HDR UK Voices - ECHILD Website Review |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to review the ECHILD website. 116 opened the newsletter. 22 people clicked the link, suggesting active engagement. It cannot be determined how many helped review the website. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.ucl.ac.uk/child-health/research/population-policy-and-practice-research-and-teaching-dep... |
| Description | HDR UK Voices - First Year Doctoral (PhD) Research and BHF Photo Stunt |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to read 8 abstracts and then provide feedback on 8 PhD presentations at the Royal Statistical Society, London. 68 opened the newsletter. 11 people clicked the link, suggesting active engagement. It cannot be determined how many eventually registered, though the event did fill capacity. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://myvolunteer.bhf.org.uk/event/qvXgDx1mb2KrtWB3Bu1Krk4TNNDtni?_hsenc=p2ANqtz--7flvyJWZOTShTGGm... |
| Description | HDR UK Voices - Focus Group Opportunities |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter informed people about focus group opportunities with CA:RING and the Est of England SDE. 98 opened the newsletter. 14 people clicked the link, suggesting active engagement. It cannot be determined how many registered to get involved |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/wp-content/uploads/2023/10/CARING-project-launch-29.09.2023.pdf?_hsenc=p2ANq... |
| Description | HDR UK Voices - HDR UK Conference |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter let people know about new spaces available at the HDR UK Conference. 101 opened the newsletter. 27 people clicked the link, suggesting active engagement. It cannot be determined how many people registered. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.eventbrite.co.uk/e/hdr-uk-conference-2024-the-grand-challenges-in-health-data-tickets-74... |
| Description | HDR UK Voices - HDR UK Conference |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to attend the HDR UK Conference 86 opened the newsletter. 18 people clicked the link, suggesting active engagement. It cannot be determined how many people made a nomination. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/hdr-uk-conference-2024-the-grand-challenges-in-health-data-tickets-74... |
| Description | HDR UK Voices - Health Data and AI Workshop |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to join a Cambridge University Hospitals NHS Foundation Trust workshop on AI. 57 opened the newsletter. 21 people clicked the link, suggesting active engagement. It cannot be determined how many eventually registered, though the event did fill capacity. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/help-shape-health-data-research-in-cambridge-tickets-689211248397?_hs... |
| Description | HDR UK Voices - Honoraria and Expenses Policy Update |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter updated public members about a change to our honroaria and expenses policy. 82 opened the newsletter. 14 people clicked the link, suggesting active engagement. It cannot be determined how many read the full policy. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/wp-content/uploads/2023/09/Honoraria-and-Expenses-PPIE-Policy.pdf?_hsenc=p2A... |
| Description | HDR UK Voices - Humber Science Festival |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to join a Cambridge University Hospitals NHS Foundation Trust workshop on AI. 58 opened the newsletter. 7 people clicked the link, suggesting active engagement. It cannot be determined how many eventually registered, though the event did fill capacity. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://scifest.hull.ac.uk/discovery-zone/ |
| Description | HDR UK Voices - Independent Information Access group |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter let people know about a chance to join a London focus group, called the Independent Information Access Group. 95 opened the newsletter. 9 people clicked the link, suggesting active engagement. It cannot be determined how many registered. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.hdruk.ac.uk/wp-content/uploads/2024/01/Independent-Information-Access-Group-Lay-Member-o... |
| Description | HDR UK Voices - Inflammation and Immunity Website Survey |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited public members complete a survey for Inflammation and Immunity Driver Programme, about their website usability. 102 opened the newsletter. 34 people clicked the link, suggesting active engagement. It cannot be determined how many eventually completed the survey. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://forms.office.com/pages/responsepage.aspx?id=sAafLmkWiUWHiRCgaTTcYQ8ADvOdoSVBuiQeckELrBRUNzFC... |
| Description | HDR UK Voices - Join the Patients Association |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members to join the Patients Association. 98 opened the newsletter. 28 people clicked the link, suggesting active engagement. It cannot be determined how many people made a nomination. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.patients-association.org.uk/forms/membership-application?_hsenc=p2ANqtz-8SWkXqisbNu3XQpC... |
| Description | HDR UK Voices - Layers of Perception |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people with prosthetics to attend a workshop. 79 opened the newsletter. 4 people clicked the link, suggesting active engagement. It cannot be determined how many people made a nomination. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/prosthetics-layers-of-perception-tickets-726761191287?_hsenc=p2ANqtz-... |
| Description | HDR UK Voices - MRC Partnerships Survey |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to take part in the MRC Partnerships Survey. 99 opened the newsletter. 26 people clicked the link, suggesting active engagement. It cannot be determined how many people completed the survey. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://engagementhub.ukri.org/mrc-regulatorysupportcentre/consultation-on-mrc-s-draft-strategy-for-... |
| Description | HDR UK Voices - NDORMS Focus Group |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to join a Nuffield Department of Orthopaedics, Rheumatology, and Musculoskeletal Sciences (NDORMS) rare disease focus group. 64 opened the newsletter. 9 people clicked the link, suggesting active engagement. It cannot be determined how many eventually registered, though the event did fill capacity. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://forms.office.com/Pages/ResponsePage.aspx?id=G96VzPWXk0-0uv5ouFLPkU7pUVdwR-dMg-HClN-3yWxURUhK... |
| Description | HDR UK Voices - NHS AI Research Project |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to attend research sessions to discuss public views and feedback on the use of patient data for researching AI solutions in healthcare. 79 opened the newsletter. 23 people clicked the link, suggesting active engagement. It cannot be determined how many eventually registered |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://view.officeapps.live.com/op/view.aspx?src=https%3A%2F%2Fwww.hdruk.ac.uk%2Fwp-content%2Fuploa... |
| Description | HDR UK Voices - NHS App Survey |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited public members to complete a survey by the Patients Association of their experience using the NHS App. 97 opened the newsletter. 30 people clicked the link, suggesting active engagement. It cannot be determined how many eventually completed the survey. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.patients-association.org.uk/News/survey-of-patients-experiences-with-the-nhs?_hsenc=p2AN... |
| Description | HDR UK Voices - NHS Research Session & DARE Webinar Reminder |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to register for an NHS Research Session and a DARE UK webinar. 74 opened the newsletter. 16 people clicked the links, suggesting active engagement. It cannot be determined how many eventually registered interest. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/breaking-barriers-building-community-exploring-dare-uk-community-grou... |
| Description | HDR UK Voices - NI Sci Fest Webinar |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to attend our NI Sci Fest Webinar. 102 opened the newsletter. 9 people clicked the link, suggesting active engagement. It cannot be determined how many signed up. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://forms.office.com/pages/responsepage.aspx?id=MEu3vWiVVki9vwZ1l3j8vJLXKudW0KpOt_qQKIbYl7RUOU1M... |
| Description | HDR UK Voices - Northern Ireland Science Festival |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to attend the Northern Ireland Science Festival 81 opened the newsletter. 3 people clicked the link, suggesting active engagement. It cannot be determined how many attended. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://nisciencefestival.com/?_hsenc=p2ANqtz-_0te-92j2oMkMr0jkaDP3tXE5Pl-RUR5GjPYBW65M4Q1yU_pxPrq8o... |
| Description | HDR UK Voices - Our Annual Survey |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to complete the HDR UK Voices Annual Survey. 114 opened the newsletter. 41 people clicked the link, suggesting active engagement. It cannot be determined how many people completed the survey on this invitation but 57 total completed it. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.surveymonkey.com/r/R6WLWBM?_hsenc=p2ANqtz--6YOljmR7sZmmxB4MuwYjlU6xv5qwRqPVZi7tjmcrfgjb4... |
| Description | HDR UK Voices - Our Annual Survey Reminder |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter reminded people to complete the HDR UK Voices Annual Survey. 96 opened the newsletter. 35 people clicked the link, suggesting active engagement. It cannot be determined how many people completed the survey on this invitation but 57 total completed it. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.surveymonkey.com/r/R6WLWBM?_hsenc=p2ANqtz--6YOljmR7sZmmxB4MuwYjlU6xv5qwRqPVZi7tjmcrfgjb4... |
| Description | HDR UK Voices - Outpatients Survey |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited public members to complete a survey by the Patients Association of their experience using Outpatients Facilities. 92 opened the newsletter. 24 people clicked the link, suggesting active engagement. It cannot be determined how many eventually completed the survey. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://forms.office.com/pages/responsepage.aspx?id=sAafLmkWiUWHiRCgaTTcYQ8ADvOdoSVBuiQeckELrBRUNzFC... |
| Description | HDR UK Voices - Oxford University Hospital Interviews |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to attend PPIE interviews with Oxford University Hospitals. 108 opened the newsletter. 42 people clicked the link, suggesting active engagement. It cannot be determined how many people applied. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/wp-content/uploads/2023/12/OPERA-1-page-PPI.pdf?_hsenc=p2ANqtz-8z8drYs3kmgPM... |
| Description | HDR UK Voices - PAG Opportunity |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to get involved in PAG. 135 opened the newsletter. 73 people clicked the link, suggesting active engagement. It cannot be determined how many signed up. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://forms.office.com/pages/responsepage.aspx?id=MEu3vWiVVki9vwZ1l3j8vJLXKudW0KpOt_qQKIbYl7RUOU1M... |
| Description | HDR UK Voices - PEDRI Resources Survey |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to join a Cambridge University Hospitals NHS Foundation Trust workshop on AI. 65 opened the newsletter. 10 people clicked the link, suggesting active engagement. It cannot be determined how many eventually registered, though the event did fill capacity. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/wp-content/uploads/2023/04/Resource-Survey-Report-Final.pdf |
| Description | HDR UK Voices - Patient Partnership Week |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited public members to attend webinars organised by the Patients Association for Patient Partnership Week. 87 opened the newsletter. 18 people clicked the link, suggesting active engagement. It cannot be determined how many eventually registered |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.patients-association.org.uk/Pages/Events/Category/events?_hsenc=p2ANqtz--RMF1-COdRIW9oHd... |
| Description | HDR UK Voices - Patient's Association Major Condition Survey |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to complete a survey on the thought around treatment of major conditions in England. 60 opened the newsletter. 10 people clicked the link, suggesting active engagement. It cannot be determined how many eventually registered interest in getting involved in the group. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.surveymonkey.co.uk/r/maj_condtns_2023?_hsenc=p2ANqtz-_RQwE8Dc8fWTkLpu96IqCNBhrdNLH-3wcDk... |
| Description | HDR UK Voices - Pride Month |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to share their LGBTQ and data science stories. 54 opened the newsletter. One reply was received, but no blogs were created. |
| Year(s) Of Engagement Activity | 2023 |
| Description | HDR UK Voices - RCP Chair |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to apply and become RCP Patient and Carer Chair. 94 opened the newsletter. 25 people clicked the link, suggesting active engagement. It cannot be determined how many people applied. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.rcplondon.ac.uk/education-practice/volunteering/recruitment-open-chair-patient-and-carer... |
| Description | HDR UK Voices - ReCORD Public Contributor Committee Support |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to apply to support the ReCORD projects Public Contributor Committee 66 opened the newsletter. 17 people clicked the link, suggesting active engagement. It cannot be determined how many eventually registered their interest. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://view.officeapps.live.com/op/view.aspx?src=https%3A%2F%2Fwww.hdruk.ac.uk%2Fwp-content%2Fuploa... |
| Description | HDR UK Voices - Stories and Humber Sci Fest |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter provided an update on the launch of HDR UK Stories and our attendance at the Humber Science Festival. 61 opened the newsletter. 6 people clicked the link, suggesting active engagement. It cannot be determined how many eventually registered |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/about-us/involving-and-engaging-patients-and-the-public/get-involved/hdr-uk-... |
| Description | HDR UK Voices - Sudlow Review |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the Public to take part in the Sudlow Review workshop. 73 opened the newsletter. 34 people clicked the link, suggesting active engagement. It cannot be determined how many eventually registered, though the event did fill capacity. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/patient-and-public-workshop-unifying-health-data-in-the-uk-review-tic... |
| Description | HDR UK Voices - Surveys Last Chance |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter informed members that it was their last chance to get involved with our PEDRI and BHF surveys 55 opened the newsletter. 11 people clicked the link(s), suggesting active engagement. It cannot be determined how many eventually completed the surveys. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.surveymonkey.co.uk/survey-closed?sm=OhAD8Vo_2FRY8D4yuLnfNZ2a_2BbWytcz1nqY2rruSovVov_2BTw... |
| Description | HDR UK Voices - The Intelligent Solution? You decide - AI in healthcare |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to attend an AI in healthcare workshop organised by WEISS 89 opened the newsletter. 6 people clicked the link, suggesting active engagement. It cannot be determined how many registered to attend the event. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/portraiture-of-the-seen-and-unseen-exploring-pattern-ultrasound-lungs... |
| Description | HDR UK Voices - The Sudlow Review Public Survey |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to complete a survey in response to a call for feedback on data use in healthcare for The Sudlow Review. 67 opened the newsletter. 13 people clicked the link, suggesting active engagement. It cannot be determined how many eventually completed the survey |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/helping-with-health-data/the-sudlow-review/?_hsenc=p2ANqtz-8Guj7uju6alSmJ9tJ... |
| Description | HDR UK Voices - The Sudlow Review Public Survey |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter let members know that the sudlow review survey had been extended 61 opened the newsletter. 8 people clicked the link, suggesting active engagement. It cannot be determined how many eventually completed the survey. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/helping-with-health-data/the-sudlow-review/?_hsenc=p2ANqtz--NRhieZaOsfSYO__i... |
| Description | HDR UK Voices - UCL Art Workshops |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter informed people about lung cancer and heart disease events they could attend if relevent to them. 91 opened the newsletter. 5 people clicked the link, suggesting active engagement. It cannot be determined how many registered. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/portraiture-of-the-seen-and-unseen-exploring-pattern-ultrasound-lungs... |
| Description | HDR UK Voices - UPD Data Terminology |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to provide their input into what terminology should be used to engage the public about TREs and more 101 opened the newsletter. 31 people clicked the link, suggesting active engagement. It cannot be determined how many people made suggestions. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://view.officeapps.live.com/op/view.aspx?src=https%3A%2F%2Fwww.hdruk.ac.uk%2Fwp-content%2Fuploa... |
| Description | HDR UK Voices - Use MY Data AI and Patient Data Webinar |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited members of the public to watch a recording of a webinar attempting to demystify AI. 71 opened the newsletter. 10 people clicked the link, suggesting they wanted to gain more awareness. It cannot be determined how many eventually watched the recording. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.surveymonkey.co.uk/survey-taken?sm=OhAD8Vo_2FRY8D4yuLnfNZ2a_2BbWytcz1nqY2rruSovVov_2BTwG... |
| Description | HDR UK Voices - Voices Survey Results |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter shared the results of our annual HDR UK Voices Survey 104 opened the newsletter. It cannot be determined how many read the survey results. |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Voices - Volunteer for MSc Students |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads and their ppie groups in case any opportunities are of interest to their members. This newsletter invited people to review MSc student projects. 105 opened the newsletter. 12 people clicked the link, suggesting active engagement. It cannot be determined how many registered. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.youtube.com/watch?v=YM0eBA00U5M |
| Description | HDR UK Voices Newsletter |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 132 people opened the newsletter - 63 total clicks on the links provided |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Voices Newsletter |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 167 people opened the newsletter and were - 249 total clicks on the links provided |
| Year(s) Of Engagement Activity | 2025 |
| Description | HDR UK Voices Newsletter |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 143 people opened the newsletter and were - 179 total clicks on the links provided |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Voices Newsletter - East of England Sub-National SDE members' perspectives |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 198 people were informed about the survey carried our by the NHS to inform the development of a East of England Sub-National SDE members' perspectives on research using mock data - 112 clicked on links provided |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Voices Newsletter - 2023-2028 HDR UK (draft) PPIE strategy |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Opportunities also sent to partner PPIE Leads signed up to the network. Overview of impact: - 28 PPIE Leads were informed about the opportunity to contribute to shaping the HDR UK PPIE Strategy. - 9 clicked on links provided. |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Voices Newsletter - 2023-2028 HDR UK (draft) PPIE strategy |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 208 people opened the newsletter and were informed about the reimbursed opportunity for involvement in shaping the 2023-2028 HDR UK PPIE Strategy. - 143 clicked on links provided. |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Voices Newsletter - BHD DSC Public members impact |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 205 people were informed about the BHF DSC news - informing on the impact of public involvement in research projects - 107 clicked on links provided |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Voices Newsletter - Imperial study on NEWS2 |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 200 people were informed about the recruitment for a research study (imperial) assessing the value and comprehensiveness of the NEWS 2 to improve overnight clinical care practices - 117 clicked on links provided |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Voices Newsletter - NIHR Public Recruitment |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 206 people were informed about the recruitment of public committee members carried out by NIHR - 143 clicked on links provided |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Voices Newsletter - PEDRI Public Workshop |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 205 people were informed about the possibility of getting involved in the PEDRI workshop - 120 clicked on links provided |
| Year(s) Of Engagement Activity | 2025 |
| Description | HDR UK Voices Newsletter - The Alan Turing Institute |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 196 people were informed about the Alan Turing institute project about exploring public perspectives on AI to improve fairness of AI tools - 102 clicked on links provided |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Voices Newsletter - The Patients Association Report |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 208 people were informed about a report on the use of NHS app, on behalf of The Patients Association (partner) - 107 clicked on links provided |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Voices Newsletter - UCL Study Recruitment |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 191 people wereinformed about An opportunity for the Voices network to participate in a University College London (UCL), Disease Atlas focus group on using anonymised health data to provide new information on the health needs of patients, the care that is provided to patients, and the research that is carried out for all diseases. - 118 people clicked in the links provided |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Voices Newsletter - University of Galway Recruitment |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 195 people were informed about a study exploring public perspectives on health-related scoping reviews (University of Galway)and invited to participate in Zoom interviews - 89 clicked on links provided |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Voices Newsletter - University of Leicester Study |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 193 people were informed about An opportunity to contribute to a University of Leicester study on the impact of COVID-19 on the health and well-being of people with multiple long-term conditions. Voices members were invited to take part in an online survey as attached on the following cell. - 120 people clicked in the links provided |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Voices Newsletter - CRUK Steering Group Recruitment |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 248 people opened the newsletter and were informed about the Cancer Research UK recruitment for a Steering Group. |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Voices Newsletter - Cardiff University Public Members Recruitment |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 199 people were informed about the recruitment the recruitment for a research study (Cardiff Uni) assessing public members' perspectives on research using mock data - 112 clicked on links provided |
| Year(s) Of Engagement Activity | 2025 |
| Description | HDR UK Voices Newsletter - GUARDS Principles Involvement |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 192 people were reminded about the GUARDS Principles Survey - 17 more public members were involved and reimbursed for involvement |
| Year(s) Of Engagement Activity | 2025 |
| Description | HDR UK Voices Newsletter - Lancashire and South Cumbria SDE Event |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 202 people were informed about an opportunity for the Voices network from the Lancashire and South Cumbria Secure Data Environment to join an event, Kendal Health Data Event on Thursday, 12 September 2024, from 6:00 to 8:30 pm at the Castle Green Hotel in Kendal to talk about how health data can be used to improve health outcomes in the local area. - 109 people clicked in the links provided |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK Voices Newsletter - The Patients Association Webinar |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | HDR UK Voices newsletters are sent out to keep public members who are interested in being updated on the latest involvement opportunities across HDR UK and our partner organisations. Overview of impact: - 210 people opened the newsletter and were informed about The Patients Association Webinar. - 9 clicked on links provided. |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK and ABPI catch up |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To catch up and discuss legal and ethics issues and updates |
| Year(s) Of Engagement Activity | 2024 |
| Description | HDR UK/ NHSE SDE access and Governance |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To discuss on going work |
| Year(s) Of Engagement Activity | 2024 |
| Description | Health Data Research Explained Webpage Engagement |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | The webpage exists to help explain what health data research is to members of the public. Due for an update No way to tell if the total reached are all public members, some may be part of the research/PPIE professional community. No way to differentiate between those reached and those truly engaged. Average engagement approx 300 per month |
| Year(s) Of Engagement Activity | 2023,2024 |
| URL | https://www.hdruk.ac.uk/about-us/what-we-do/health-data-research-explained |
| Description | Health Research Authority, Medical Research Council and Health Data Research UK catch ups |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Members of the HDR UK information governance team meet with employees from the HRA and MRC to discuss current issues and collaborate. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Humber Science Festival |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Our aims were: Raise awareness of health data research Encourage involvement in HDR UK Voices" Impact Overview: Involved over 120 people in competitions Reached approx 200 people Reached an audience who had never heard about health data before Reached the younger audience Received 24 new sign ups to HDR UK Voices |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://hdruk.box.com/s/jg15tix283bjccnhupsf00oh5e14r47j |
| Description | Humber Science Festival Blog |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Blog to showcase what HDR UK achieved at the Humber Science Festival and our learnings. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.hdruk.ac.uk/news/science-festivals-reaching-out-to-new-audiences-about-health-data/ |
| Description | IPDLN activities - HDRN, HDR UK, ADR UK, PHRN |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | To plan an IPDLN event alongside PHRN, HDRN and ADR UK |
| Year(s) Of Engagement Activity | 2024 |
| Description | International Data Access Workshop (ADDIE Data Pilots) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To review international data access and create future related plans. |
| Year(s) Of Engagement Activity | 2024 |
| Description | International access action force |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To progress work relating to information governance issues with international access to data in accordance with the Pan-UK Governance Steering group priorities. |
| Year(s) Of Engagement Activity | 2024 |
| Description | July Bi-weekly bulletin for members of the Public Advisory Board |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 14 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. The bulletin is also sent to HDR UK Senior Leadership Team members and members of HDR UK via email and Slack channels. As a result of this bulletin, here is an overview of the impact: - 5 PAB members communicated their interest in joining the PPIE Awards panel. |
| Year(s) Of Engagement Activity | 2023 |
| Description | June Bi-weekly bulletin for members of the Public Advisory Board |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 14 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. The bulletin is also sent to HDR UK Senior Leadership Team members and members of HDR UK via email and Slack channels. Here is an overview of the impact: - 1 member of the staff requested to be added to the mailing list - 4 PAB members got involved in the prioritisation of activities for the science festivals - Increased staff awareness of PAB's work (7 staff members read the bulletin) - Increased awareness of the latest news at HDR UK. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Mapping project |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To progress a project to create a tube map of the data access processes within TREs in line with the priorities of the Pan-UK Governance Steering Group |
| Year(s) Of Engagement Activity | 2024 |
| Description | May Bi-weekly bulletin for Public Advisory Board members |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 14 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. As a result of this bulletin, here is an overview of the impact: - 7 PAB members volunteered to become a Pan UK Data Governance Steering Group member - 2 PAB members reached out to know more about the PEDRI initiative - 1 Senior Leadership Team (SLT) member reached out, asking for the bulletin to be circulated among HDR UK staff - 1 SLT member asked for the involvement of PAB in a piece of work they are leading - 2 members of the PPIE team asked for clarifications on the progress of ongoing work. |
| Year(s) Of Engagement Activity | 2023 |
| Description | May Bi-weekly bulletin for members of the Public Advisory Board |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 14 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. The bulletin is also sent to HDR UK Senior Leadership Team members and members of HDR UK via email and Slack channels. In response to this bulletin: - 6 people volunteered to get involved in response to the Data Protection Digital Information Response Bill - 6 people volunteered to join the Data Access Tube Map Working Group - 4 people reached out, asking for more information about a couple of other involvement activities mentioned - 2 HDR UK staff members asked to be added to the mailing list, having had access to the bulletin only through the post on the hdruk Slack channel. - 2 SLT members replied with comments/questions - 4 PPIE team members replied with comments/questions |
| Year(s) Of Engagement Activity | 2023 |
| Description | NHSE SDE access workshop |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Meeting to discuss NHSE SDE access methods |
| Year(s) Of Engagement Activity | 2024 |
| Description | NHSE/ HDR UK catch up |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Catch up to discuss on going ways of working |
| Year(s) Of Engagement Activity | 2024 |
| Description | NHSE/HDR UK call |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Collaborative working for the development of the NHS SDE network |
| Year(s) Of Engagement Activity | 2024 |
| Description | NI Science Festival Webinar |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Webinar held to share the work of both HDR UK and Queen's University Belfast with the wider Northern Irish community. 30 people were in attendance at it's height. Another 10 had link difficulty and will watch the recording. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://nisciencefestival.com/ |
| Description | National Data Guardian and Health Data Research UK - Catch ups |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Members of the HDR UK information governance team meet with employees from the National Data Guardian to discuss current issues and collaborate. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Nuffield Council on Bioethics 2024-2028 Strategy Launch |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Supporters |
| Results and Impact | A event organised to celebrate the launch of our new five-year strategy. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.nuffieldbioethics.org/our-approach/strategy-and-impact/#:~:text=Our%20strategic%20goals%... |
| Description | ONS/ ADR UK/ HDR UK catch up |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Catch ups to discuss ongoing ways of working |
| Year(s) Of Engagement Activity | 2024 |
| Description | Office of the National Data Guardian and HDR UK catch up calls |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To discuss area relating to CAG, Opt-outs, new policy that requires engagement, |
| Year(s) Of Engagement Activity | 2024 |
| Description | Online Data Access and Research for social benefit: a policy workshop |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Attended a policy workshop to discuss and input on work on going |
| Year(s) Of Engagement Activity | 2024 |
| Description | Orkney Science Festival |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | To engage with members of the public of all ages and backgrounds in Orkney, Scotland about what health data researchers use health data for. Overview of impact: - 250 members of the public engaged with our activities that were previosuly unknown to HDR UK - 1 BHF DSC public contributor and 1 HDR public contributor received an honorarium for their involvement 26 members of the public completed an online feedback survey on the day and overall feedback was very positive: • 17 respondents rated the activities as 'excellent' and nine as 'good' • Nine respondents told us that they were 'much more aware' of how health data is used in research and 12, 'a bit more' aware • Eight respondents told us that the activities had made them 'much more trusting' of how health data is used in research and nine, 'a bit more trusting' • The word most commonly used to describe the activities was 'fun' • Nine respondents told us they feel connected to science and actively seek out science news, events and activities • 14 told us that they are interested in science but don't actively seek out science news, events and activities11 respondents were under 20 years old. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.hdruk.ac.uk/news/reflecting-on-our-science-festival-journey-and-whats-next/ |
| Description | PEDRI 1st Year Anniversary |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Celebration of the first year since PEDRI's launch. 30 people attended in-person and at least 10 people online. |
| Year(s) Of Engagement Activity | 2023 |
| Description | PEDRI Best Practice Standards Working Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Regular weekly meetings throughout 2023 to develop and define Best Practice Standards in Data and statistics. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.pedri.org.uk/ |
| Description | PEDRI Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Monthly newsletter sent out to over 400 people with the latest updates from the Public Engagement in Data Research Initiative (PEDRI). |
| Year(s) Of Engagement Activity | 2023,2024 |
| Description | PEDRI Communication Working Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Representatives of the Comms team of the PEDRI initiative partners have met regularly throughout 2023 to support the work of the Best Practice Standards Working Group and campaigning to increase awareness around health data. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.pedri.org.uk/ |
| Description | PEDRI New Families Campaign |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Support on the PEDRI pilot campaign to raise awareness of how data is collected and used Educate people on how data is used and the benefits realised Encourage people to engage in conversations about data Improve representation and empower people to feel confident in the value and potential of data initiatives" No way to tell if the total reached are all public members, some may be part of the research/PPIE professional community. No way to differentiate between those reached and those truly engaged. 1,905 visited the webpage |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/about-us/involving-and-engaging-patients-and-the-public/get-involved/your-da... |
| Description | PPIE Award Panel |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Meeting for the HDR UK PPIE award panel. 8 panel members reviewed 20 applications |
| Year(s) Of Engagement Activity | 2024 |
| Description | PPIE Guidance for Early Career Researchers |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | A working group involving public members and early career researchers (ECRs) representatives for the development of targeted PPIE guidance. Here is the overview of impact to date: - Initiated a collaboration counting 5 working group meetings to date - Co-produced a survey receiving 65 responses - Developed a report with recommendations - Increased awareness of challenges specific to ECRs - Raised awareness amongst key partners involved in sharing insights from this collaboration |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.hdruk.ac.uk/news/challenges-and-opportunities-for-involving-and-engaging-patients-and-th... |
| Description | PPIE Strategy Workshop - Voices |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Public contributors from HDR UK Voices, who fed in to the public engagement strategy, were invited to feedback on the PPIE strategy which integrates the shorter term engagement strategy. 17 public contributors attended the workshop and 1 public contributor engaged by email. The PPIE strategy will be adapted according to feedback. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://hdruk.box.com/s/h0vtizr6z1q6l1zcvd10le3env4rfweb |
| Description | PPIE Webpage Engagement |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | The website was updated on 26th January. Since then it has been used inform the public of involvement opportunities and provide general information on how we involve and engage the public. Average engagement 300 - 400 per month No way to tell if the total reached are all public members, some may be part of the research/PPIE professional community. No way to differentiate between those reached and those truly engaged. In the same way, we cannot tell if their visits resulted in signing up to involvement opportunities or joining HDR UK Voices. |
| Year(s) Of Engagement Activity | 2023,2024 |
| URL | https://www.hdruk.ac.uk/about-us/involving-and-engaging-patients-and-the-public/ |
| Description | Pan UK Data Governance Steering Group Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | 2 Public Advisory Board (PAB) members and the former PAB Chair represent the public in the Pan UK Data Governance Steering Group to inform work agenda and activities. The feedback they provided on that occasion led to identifying topics requiring further discussion and informed decisions about a new action force. Their involvement also helped the team reflect on how to make these meetings more accessible and inclusive. All people participating were provided with an honorarium and reimbursement of travel expenses if they attended online. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Pan UK steering group meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The Pan-UK Data Governance Steering Group is a working Group of the Alliance representing data custodians and policymakers across the four nations. The Steering Group is focused on simplifying and streamlining data access governance processes. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Prioritising Science Festivals |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Public Advisory Board (PAB) members were invited to reflect on which audience HDR UK needed to reach to engage in PPIE activities and shortlist Science Festival opportunities for the years 2023 and 2024. Following their involvement in this activity: - the 3 Science Festivals that scored high were added to the HDR UK diary - 3 PAB members expressed their interest in being further involved with the planning. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Advisory Board April Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of work ongoing and reminders of monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling PAB to inform work that they do not necessarily lead but are happy to contribute to. Overview of impact: - Received updates on the progress made on the development of the HDR UK PPIE Strategy, providing feedback - PAB members received an honorarium for their participation |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board April Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote the advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address the public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of work ongoing and reminders of monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling PAB to inform work that they do not necessarily lead but are happy to contribute to. Here is an overview of the impact: - Informed decision-making about the next steps of the Pan UK Data Governance Steering Group Action Force by assessing the Data Access Tube Map purpose, design, and process - Influenced the development of the Transparency Standards for Alliance members - Affected HDR UK's funds for PPI, given that all people involved received a 75£ honorarium for their attendance at the meeting. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Advisory Board August Bi-Weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 14 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. The bulletin is also sent to HDR UK Senior Leadership Team members and members of HDR UK via email and Slack channels. Here is an overview of the impact: - Increased staff's awareness of PAB members' work - Resulted in 4 PAB members deciding to participate in an event - Impacted future work by encouraging 3 PAB members to participate in a series of workshops for the implementation of Transparency Standards amongst Alliance members. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Advisory Board August Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 12 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. Overview of impact: - Informed PAB members and HDR UK staff via the bulletin on latest developments and news items. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board August Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 14 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. The bulletin is also sent to HDR UK Senior Leadership Team members and members of HDR UK via email and Slack channels. Here is an overview of the impact: - Increased staff's awareness of PAB members' work - Increased staff's interest in knowing more about PAB - Resulted in 1 PAB member deciding to get involved in the HDR UK-Alan Turing Institute activity. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Advisory Board August Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 12 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. Overview of impact: - Informed PAB members and HDR UK staff via the bulletin on latest developments and news items. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board August Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 12 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. Overview of impact: - Informed PAB members and HDR UK staff via the bulletin on latest developments and news items. - More people involved in HDR UK activities" |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board August Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of work ongoing and reminders of monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling PAB to inform work that they do not necessarily lead but are happy to contribute to. Overview of meeting and impact: - Update provided by Doreen Tembo on the HDR UK PPIE strategy document and what's next in September & October 2024. - Ester Bellavia introduced a topic for discussion with the PAB, 'The role of PAB and the SSG', collecting feedback on changes to ways of working. - Ester and Cassie Smith continued the conversation on AI discussions and provided next steps. - PAB members received an honorarium for their participation. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board August meetings |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote the advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address the public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of ongoing work and reminders of the monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling PAB to inform work that they do not necessarily lead but are happy to contribute to. Here is an overview of the impact: - Provided feedback on PPIE Strategy development - Provided input into NHS Value Framework, informing the following steps (Call on 6 Sept) - Encouraged interest in the work of the Alliance and the possibility of joining the Alliance Executive Committee/getting involved in related workstreams - All PAB members attending the meeting were offered a £75 honorarium, affecting the PPIE budget. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Advisory Board December Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 14 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. The bulletin is also sent to HDR UK Senior Leadership Team members and members of HDR UK via email and Slack channels. Here is an overview of the impact: - 5 PAB members decided to get involved in some activities. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Advisory Board December Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 12 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. Overview of impact: - Informed PAB members and HDR UK staff via the bulletin on latest developments and news items. - Generated involvement. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board December Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 14 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. The bulletin is also sent to HDR UK Senior Leadership Team members and members of HDR UK via email and Slack channels. Here is an overview of the impact: - 7 PAB members expressed interest in getting involved in an activity - 3 shared their interest in participating in a survey - Increased awareness of events planned. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Advisory Board February Bi-Weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 11 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. Here is an overview of impact: - Informed PAB members and HDR UK staff via the bulletin on latest developments and news items. |
| Year(s) Of Engagement Activity | 2025 |
| Description | Public Advisory Board February Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 12 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. Overview of impact: - Informed PAB members and HDR UK staff via the bulletin on latest developments and news items. - Generated more involvement |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board February Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of work ongoing and reminders of monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling PAB to inform work that they do not necessarily lead but are happy to contribute to. Overview of impact: - Informed a co-production framework of evaluation - Impacted funds |
| Year(s) Of Engagement Activity | 2025 |
| Description | Public Advisory Board January Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 12 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. Overview of impact: - Informed PAB members and HDR UK staff via the bulletin on latest developments and news items. - Generated more involvement |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board January Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 12 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. Overview of impact: - Informed PAB members and HDR UK staff via the bulletin on latest developments. - PAB members reached our for involvement on certain activities. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board January Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of work ongoing and reminders of monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling PAB to inform work that they do not necessarily lead but are happy to contribute to. Overview of agenda and impact: - PAB members to provide feedback on the Draft PPIE delivery plans and the Brain Health PPIE strategy. - PAB members received an honorarium. |
| Year(s) Of Engagement Activity | 2025 |
| Description | Public Advisory Board July Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 12 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. Overview of impact: - Informed PAB members and HDR UK staff via the bulletin on latest developments. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board July Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 12 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. Overview of impact: - Informed PAB members and HDR UK staff via the bulletin on latest developments. - PAB members reached our for involvement on certain activities |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board July Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote the advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address the public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of ongoing work and reminders of the monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling PAB to inform work that they do not necessarily lead but are happy to contribute to. Here is an overview of the impact: - Provided feedback on PPIE Strategy development - Provided input into HDR UK Driver programmes - Provided input on how to gain optimal public feedback in the Sudlow Review - Agreed to join the Sudlow Review workshop - All PAB members attending the meeting were offered a £75 honorarium, thus affecting the PPIE budget. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Advisory Board June Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 12 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. Overview of impact: - Informed PAB members and HDR UK staff via the bulletin on latest developments. - PAB members reached our for involvement on certain activities |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board June Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of work ongoing and reminders of monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling PAB to inform work that they do not necessarily lead but are happy to contribute to. Overview of meeting and impact: - Update provided by Cassie Smith on the Senior Leadership Teams response to the deprioritisation of Artificial Intelligence (AI), with collection of feedback - Update provided by Amarpreet Judge on the draft briefing for the Office of Life Science (OLS) - Update provided by Ester Bellavia on year 2 of HDR UK's Driver Programmes - Update provided by Ester Bellavia on HDR UK's Honoraria and Expenses Policy, with collection of feedback on proposed changes - PAB members received an honorarium for their participation |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board June Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote the advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address the public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of ongoing work and reminders of the monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling PAB to inform work that they do not necessarily lead but are happy to contribute to. Here is an overview of the impact: - Encouraged understanding of the value of public members' involvement at early stages - Influenced Equality, Diversity and Inclusion plans - Reminded people involved of their impact - All PAB members attending the meeting were offered a £75 honorarium, thus affecting the PPIE budget. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Advisory Board March Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 14 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. The bulletin is also sent to HDR UK Senior Leadership Team members and members of HDR UK via email and Slack channels. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board March Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 14 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. The bulletin is also sent to HDR UK Senior Leadership Team members and members of HDR UK via email and Slack channels. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board March Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of work ongoing and reminders of monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling PAB to inform work that they do not necessarily lead but are happy to contribute to. Here is an overview of impact: - Informed the next steps for the ongoing PPIE draft strategy consultation. - PAB members received an honorarium for their participation. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board May Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote the advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address the public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of ongoing work and reminders of the monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling PAB to inform work that they do not necessarily lead but are happy to contribute to. Here is an overview of the impact: - Informed a second version of the co-developed proposal of new Terms of Reference for PAB - Influenced decision-making on the potential Brain Health Partnership programme, suggesting PPIE approaches as well - All PAB members attending the meeting were offered a £75 honorarium, thus affecting the PPIE budget. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Advisory Board May Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of work ongoing and reminders of monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling PAB to inform work that they do not necessarily lead but are happy to contribute to.Overview of impact: - Update provided by Doreen Tembo on the PPIE strategy following Stand's report - Update provided by Jonathan Wood on HDR UK's conference feedback - Update provided by Cassie Smith on the Senior Leadership Teams response to PAB on HDR UK's strategy - PAB members received an honorarium for their participation |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board November Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 12 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. Overview of impact: - Informed PAB members and HDR UK staff via the bulletin on latest developments and news items. - Generated involvement in internal and external projects. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board November Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 14 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. The bulletin is also sent to HDR UK Senior Leadership Team members and members of HDR UK via email and Slack channels. Here is an overview of the impact: - Informed PAB members and HDR UK staff responding to the bulletin on the latest developments - Encouraged 5 PAB members to get involved in activities. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Advisory Board November Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 12 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. Overview of impact: - Informed PAB members and HDR UK staff via the bulletin on latest developments and news items. - Generated more involvement. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board November Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of work ongoing and reminders of monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling PAB to inform work that they do not necessarily lead but are happy to contribute to. Overview of agenda and impact: - Provided PAB with an update on ongoing AI discussions at HDR UK; - Provided an update on the outputs of the SInG retreat, share insights from the Sudlow Review launch event. - Increase awareness of the BHF DSC Strategy and Case Studies. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board November Meeting |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote the advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address the public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of ongoing work and reminders of the monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling the Public Advisory Board (PAB) to inform work that they do not necessarily lead but are happy to contribute to. Here is an overview of the impact: - Informed the development of a priority list to share with the Senior Leadership Team (SLT) - Increased awareness of recent NHS changes (FDP announcement), giving an opportunity to share concerns related to this news and additional ones (The Observer article)and received clarifications from SLT on HDR UK position - PAB members received an honorarium for their participation, affecting the team budget. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Advisory Board October Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 14 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. The bulletin is also sent to HDR UK Senior Leadership Team members and members of HDR UK via email and Slack channels. Here is an overview of the impact: - Increased awareness of the latest developments. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Advisory Board October Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 12 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. Overview of impact: - Informed PAB members and HDR UK staff via the bulletin on latest developments and news items. - More involvement in activities. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board October Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of work ongoing and reminders of monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling PAB to inform work that they do not necessarily lead but are happy to contribute to. Overview of agenda and impact: - Two new PPIE team members were introduced to the PAB. - One PAB member gave an update on their insights from the 2 day Strategy and Integration (SInG) retreat. - Ester provided an updated version of the 'strawman' with regards to new ways of working with the PAB and SSG (feedback was integrated from the September PAB meeting). PAB members provided additional suggestions for change. - Amarpreet Judge gave an update on HDR UK's communications with the new Government and shared insights into our recently formed international partnerships. - PAB members received an honorarium for their participation. |
| Year(s) Of Engagement Activity | 2025 |
| Description | Public Advisory Board October Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote the advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address the public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of ongoing work and reminders of the monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling PAB to inform work that they do not necessarily lead but are happy to contribute to. Here is an overview of the impact: - Informed the development of a new Communication strategy - Encouraged reflection on the External affairs job role and its potential links with the public/PAB - Questioned the role/remit of SSG, encouraging further refinement of the current ToR draft - PAB members received an honorarium for their participation, affecting the team budget. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Advisory Board September Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 12 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. Overview of impact: - Informed PAB members and HDR UK staff via the bulletin on latest developments and news items. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board September Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 14 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. The bulletin is also sent to HDR UK Senior Leadership Team members and members of HDR UK via email and Slack channels. Here is an overview of the impact: - 2 PAB members volunteered to get involved in interviewing the PPIE Officer - 1 PAB member submitted an EOI form to join the Alliance Executive Committee - 1 HDR UK staff member requested to join a future PAB meeting to start learning about their work - Increased awareness of PAB's work amongst 4 members of HDR UK staff. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Advisory Board September Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 14 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. The bulletin is also sent to HDR UK Senior Leadership Team members and members of HDR UK via email and Slack channels. Here is an overview of the impact: - Increased awareness of PAB and PPIE team activities across HDR UK, engaging 5 HDR UK staff members. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Advisory Board September Bi-weekly Bulletin |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Members of the Public Advisory Board (PAB) - 12 - receive a bi-weekly bulletin that provides an update on their areas of work and informs them about the latest on HDR UK's news, events and opportunities for involvement. Overview of impact: - Informed PAB members and HDR UK staff via the bulletin on latest developments and news items. - Plans made for future activities. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Advisory Board September Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote the advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address the public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of ongoing work and reminders of the monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling PAB to inform work that they do not necessarily lead but are happy to contribute to. Here is an overview of the impact: - Informed the development of a new action log and provided suggestions for the improvement of the current version of the HDR UK PPIE Strategy - PAB members received an honorarium for their participation. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Advisory Board September Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Public Advisory Board (PAB) meets monthly to discuss areas of work, promote advancement of meaningful public involvement in HDR UK's work, and advance suggestions on how to address public's concerns on health data research. Each meeting is characterised by an agenda and related readings, including a summary of work ongoing and reminders of monthly impact on HDR UK's work. Monthly meetings are also attended by HDR UK staff seeking advice on specific topics, enabling PAB to inform work that they do not necessarily lead but are happy to contribute to. Overview of agenda and impact: - PAB members contributed to the Complex Disease Driver Programme PPIE Strategy. - Ester collected further feedback on a new model of PAB/SSG involvement, which will further developed. - PAB members received an honorarium for their participation. |
| Year(s) Of Engagement Activity | 2025 |
| Description | Public Advisory Board Subgroup Meetings |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | A subgroup of the Public Advisory Board (PAB) volunteered to work together with the team to develop a draft of the HDR UK Patient and Public Involvement and Engagement (PPIE) strategy for public consultation in 2024. A total of 5 meetings were organised between October and November. Here is an overview of the impact: - Contributed to the decision-making about the PPIE strategy structure and next steps - Informed the development of a draft document - Shaped the slides and related content for internal consultation - Honoraria were issued after each meeting, affecting the team budget. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Public Engagement Strategy Workshop 2 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | The Public Engagement Strategy has been drafted. To ensure the strategy aligns with public opinion, a second workshop was held with those at the previous workshop in January. We asked them for their opinion on the updated purpose and key messages, what they thought of the audience, organisations and charities defined and what they thought of our goals. 21 people signed up and 16 people attended the first session. 2 further public members provided their feedback by email. We are currently including their responses in our first draft. The strategy will be updated. Once updated, it will be sent to them for transparency purposes. They may comment on it, but this is not essential. 18 people actively involved in workshop Public Engagement Strategy to be updated based on public input. Engagement activities planned and developed based on the strategy the ppie members helped develop." Public were very engaged again, 3 nations were represented and there were a variety of backgrounds included. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.eventbrite.co.uk/e/public-engagement-strategy-workshop-2-30-may-2023-tickets-63538160247... |
| Description | Public Involvement in the HDR UK Black Internship Programme |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Public Advisory Board (PAB) members played a key role in ensuring that interns received information and training on Patient and Public Involvement and Engagement (PPIE) in health data research. Overview of Impact: - PPIE Friday session with Black Internship Programme (BIP) interns, covering the importance and practical approaches to involving and engaging patients and the public. - Assessment of 23 BIP intern posters ahead of the closing ceremony. - Final PPIE poster judging at the closing ceremony, attended by over 50 interns. - PAB members received an honorarium for their contributions, including participation in the PPIE Friday session, poster scoring, and final judging at the closing ceremony. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Involvement in the HDR UK Gateway |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The purpose of this workshop was to gain Public Advisory Board (PAB) members feedback on the current Gateway (ahead of the Enhanced Gateway) and what feedback they could give from a patient and public point of view. Overview of impact: - Gathered feedback from PAB members on their perception of the Gateway, what the public would be most interested in knowing and understanding about the Gateway, and what type of communication resources about the Gateway would be received well by patients and the public. - A list of short term and long term actions were drawn up. - PAB member received an honorarium for their involvement. |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.hdruk.ac.uk/research/research-data-infrastructure/the-gateway/ |
| Description | Public Involvement in the Research Registry Project |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Involvement of our Public Advisory Board members in the Researcher Registry Project led by the UK Health Data Research Alliance. Overview of impact: - Informed a public consultation approach. - Informed user-friendly documentation about the project. - Public members involved were reimbursed for their contributions. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Involvement in the Strategy and Integration Group Retreat (SInG) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The Strategy & Integration Group (SInG) plays a vital role in maintaining alignment across all HDR UK activities. Public Advisory Board members joined the 2 day retreat to contribute their views and ideas. The retreat included leads from across the Institute and focused on celebrating progress and building connections across Institute teams to support future delivery of HDR UK's strategy. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Public Involvement in the UK Science Festivals Network conference 2025 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | One of our Public Advisory Board member co-produced and delivered a presentation on how HDR UK involves and engages the public in health data. |
| Year(s) Of Engagement Activity | 2025 |
| URL | https://www.eventbrite.co.uk/e/uk-science-festivals-network-conference-2025-tickets-1105582239239 |
| Description | Research Data Scotland RAS (Researcher Access Service) Workshop with HDR UK Scotland |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | To allow HDRUK to learn more and give us ideas for DAR planning. There is also the possibility that this workshop will allow further collaboration with Scotland/build and interoperable solution |
| Year(s) Of Engagement Activity | 2024 |
| Description | Research Passport Project Workshop |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To get feedback on the proposed next steps and gather criteria of what would be expected when the researcher passport portal starts getting developed |
| Year(s) Of Engagement Activity | 2024 |
| Description | Researcher registry - information governance review |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To provide information governance input in the form of the documentation accompanying the researcher registry |
| Year(s) Of Engagement Activity | 2024 |
| Description | Researcher registry IG and policy working group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | To brainstorm the minimum requirements that should be considered when assessing the safe people aspect of the 5 safes. With the goal of publishing a good practice guide. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Reserach Passport Project Board Meeting |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Initial discussion to plan next steps. To assess how to approach the Pan-UK steering group and collate appropriate criteria which I'll support the gateway team in building a usable researcher passport portal |
| Year(s) Of Engagement Activity | 2024 |
| Description | Reviewing the HDR UK PPIE Honoraria and Expenses Policy |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Public Advisory Board (PAB) members were invited to review the draft document designating the first HDR UK policy for PPIE activities payment. As a result of this involvement activity: - the draft policy developed improved in clarity and accessibility of language - HDR UK staff agreed to change some aspects of the approaches to the reimbursement of expenses, following a better understanding of triggers to inclusiveness - people involved increased their understanding of payment processes - people involved received a £50 honorarium, thus affecting the PPIE budget. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/wp-content/uploads/2023/11/Honoraria-and-Expenses-PPIE-Policy.pdf |
| Description | SDE Netowrk IG and Ethics |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A workshop to understand the IG and ethics considerations across the SNSDE network |
| Year(s) Of Engagement Activity | 2024 |
| Description | SDE Network/HDRUK IG workshop: Data access |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | To present the options in terms of data access to the SDE's and get some concensus on what approach the gateway team needs to build on. |
| Year(s) Of Engagement Activity | 2023 |
| Description | SNSDE CoP IG and Ethics - confidentiality/controller and processor models |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | HDRUK are supporting the development and progression of the SNSDE network, this particular meeting dealt with the complexity of confidentiality, opt outs, Section 251 agreements and controller and processor models |
| Year(s) Of Engagement Activity | 2023 |
| Description | September Sudlow Review Workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Public members were invited to participate in the Sudlow Review. Here is an overview of the impact: - Feedback will be integrated into the final version of the review - Attendees were provided with an honorarium - Following concerns over payment methods, we are exploring vouchers as an alternative. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hdruk.ac.uk/helping-with-health-data/the-sudlow-review/ |
| Description | Shared Commitment to Public Involvement - Committing to change workshop |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | 24.04.23. Participating in a workshop organised by NIHR and HRA in collaboration with 2 HDR UK's Public Advisory Board (PAB) representatives and contributing to inform positive change in the field of Patient and Public Involvement in health and care research. Following this workshop, here is an overview of the impact: - increased understanding of the key challenges in PPI in health and care research - increased awareness of inclusion and impact tools currently under evaluation - influenced decision-making about the agenda and resources necessary for the next year of HDR UK's PPI activities. |
| Year(s) Of Engagement Activity | 2023 |
| URL | https://www.hra.nhs.uk/about-us/news-updates/building-shared-commitment-blog-barbara-molony-oates/02... |
| Description | Shortlisting applications for call for funding (Transparency standards) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | Clarifying and going through the expectation of reviewing Transparency CFF with PAB volunteer |
| Year(s) Of Engagement Activity | 2023 |
| Description | St george's Market - NI Science festival |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Short activities (Lego data sorting and Hook a Duck) held at a small stall at St George's Market 336 people attended and engaged 20 Voices sign-ups |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://nisciencefestival.com/ |
| Description | Strategy Steering Group April Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The Strategy Steering Group includes PPIE professionals and members of the public, including representatives of our Public Advisory Board. Here is an overview of the agenda items: Discussing the following agenda: - Update on membership and future plans - HDR UK Strategy update - Update on the PPIE strategy consultation - Early findings from the public consultation on the PPIE strategy - Discussion on the findings from the PEDRI report (from consultation in 2023) Here is an overview of impact: - Updated that we will be recruiting for more SSG members, but will put this on hold for a few months - Agreed to share the PPIE strategy consultation report with SSG via email for feedback and comments - Honorarium was received for 2 PAB members that attended the meeting - Agreed to stay in touch via email until the next meeting in September |
| Year(s) Of Engagement Activity | 2024 |
| Description | Strategy Steering Group January Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The Strategy Steering Group (SSG) includes PPIE professionals and members of the public, including representatives of our Public Advisory Board. Here is an overview of the agenda: - Update on the delivery of HDR UK's Strategy - Update on the PPIE Strategy Consultation report - Update and discussion on HDR UK's PPIE Strategy draft plans for Involvement and Engagement Here is an overview of impact: - Decision made about next steps. - Honoraria given to public members attending. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Strategy Steering Group July Meeting |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | The Strategy Steering Group (SSG) includes PPIE professionals and members of the public, including representatives of our Public Advisory Board (PAB). Here is an overview of the agenda: To provide feedback on the Draft PPIE delivery plans, the Brain Health PPIE strategy, and discuss future SSG membership. Here is an overview of impact: To involve SSG and PAB members in PPIE monitoring and evaluation. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Strategy Steering Group Meetings |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A total of 3 meetings were organised between September and November to inform the development of the HDR UK Patient and Public Involvement and Engagement (PPIE) strategy draft. This group was established in August 2023 and included experts in the field of PPIE and data, as well as patients and the public. Here is an overview of the impact: - Contributed to the decision-making about the PPIE strategy structure and next steps - Informed the development of a draft document - Shaped the slides and related content for internal consultation - Honoraria were issued to patients and the public only after each meeting, affecting the team budget. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Sudlow review IG and legal review |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To review and discuss the Sudlow review from a Legal and Information governance perspective |
| Year(s) Of Engagement Activity | 2024 |
| Description | TRE Legal Toolkit meeting |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To discuss and co-develop the Data Contributor Agreement template. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Technology Meta Sprint |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | There are regular meetings where the technology gateway team review up coming development activities by the gateway team and discuss how they can be supported, either via having separate IG meetings relating to cohort discovery, incident management and or DPIA of the gateway. These meetings are also a great opportunity to highlight how the team can work together and outstanding actions. |
| Year(s) Of Engagement Activity | 2023 |
| Description | The PSC - SDR UK Legal and Ethics Discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To review and discuss the findings of the PSC review of SDR UK's legal and ethics processes |
| Year(s) Of Engagement Activity | 2024 |
| Description | Training module discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To discuss a potential information governance training module for access to TRE/ SDEs |
| Year(s) Of Engagement Activity | 2024 |
| Description | Transparency Standards Funding Call - Public panel |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | A meeting was planned to discuss the applications received to the Transparency Standards funding call. Each Public Advisory Board (PAB) member was assigned six applications to score within a week and discuss at the online meeting with other panel members. PAB members played a crucial role in the decision-making process for successful applications, actively participating in allocating funds. Their involvement also contributed to understanding the requirements for meaningful public involvement. They communicated increased awareness of the shortlisting process for funding calls due to their involvement and a deeper grasp of the critical focus areas discussed in the assigned applications. All PAB members received an honorarium for participating in the shortlisting and the panel review meeting. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Transparency Standards event PPIE discussion |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | To get ideas on how to assess posters and the type of information that should be included in awardees posters for the Transparency standards show case |
| Year(s) Of Engagement Activity | 2024 |
| Description | Transparency standards finding call discussion with awardees |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | To discuss and get further insight into what the awarded organsiations are planning to do, Get info on possible issues with using the funding and providing more information into the Transparency showcase in May. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Ways of working with the public |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | A working group was established to explore new ways of collaborating with our Public Advisory Board (PAB). Over the course of four meetings, the group achieved the following: - Co-produced updated ways of working for 2025 - Identified key areas for improvement and future activities - Defined new approaches for communicating with the general public about PAB-led or supported work - Ensured all public members were reimbursed for their involvement |
| Year(s) Of Engagement Activity | 2024 |