INTUIT: 'Interaction Design for Trusted Sharing of Personal Health Data to Live Well with HIV'
Lead Research Organisation:
Newcastle University
Department Name: Sch of Computing
Abstract
As interactions with data become an increasingly inherent feature of everyday life, including through health management and lifestyle tracking, and as the diversity of users grows, it seems likely that citizens' concerns for Trust, Identity, Privacy and Security (TIPS) will continue to increase and evolve. Crucially, experiences related to breaches of personal privacy are particularly challenging for those living with potentially stigmatising conditions. Yet, the particular nature and extent of such challenges are only starting to be understood.
The importance of quality of life and well-being for those living with long-term conditions (LTCs) is increasingly recognised by both healthcare providers and citizens, as is the potential for patient-generated (health-related) data to be used to improve healthcare provision and the management of such conditions. However, the communication of individuals' personal data about their 'health' and 'lifestyle', and the inferences that may be made from it, are inextricably linked to identity management. Therefore, the disclosure and processing of such data raises critical TIPS issues for those who may fear discrimination or experience stigma.
This project seeks to identify and address fundamental TIPS challenges faced by those managing stigmatised LTCs in managing their health and interacting with care services, peer support networks, and private organisations. We will develop new tools providing people with opportunity and choice for managing the trusted sharing of their self-generated data with others. We will envision innovative service propositions that are grounded in a new empirical understanding of challenging but highly relevant contexts for sharing these data.
Through effective treatment, the Human Immunodeficiency Virus (HIV) has been transformed to a LTC with normal life expectancy, but remains highly-stigmatised. HIV therefore provides a specific clinical and social context where sharing personal data presents significant design challenges related to addressing TIPS concerns and barriers.
Our ambitious work programme brings together experts in the HIV sector, Public Health, Human Computer Interaction Design, Health Psychology, Health Informatics and Applied Ethics to: envision, develop and evaluate pioneering trusted new tools that empower individuals to use personal data for self-managing their condition, to live and age well with HIV; understand what it means to share these data with particular others, including healthcare providers, communities, and private organisations; and to identify ethical issues associated with TIPS for managing stigma and well-being. Whilst our work plan focuses on people living with HIV, it ensures that insights from studying this population has transferability to other stigmatised LTCs such as mental health conditions.
Our participatory approach engages academic and non-academic partners and stakeholders in defining the research, in conducting studies, and making sense of the results. This includes: members of the HIV peer community and their advocates; academic clinicians; experts in public health surveillance and cybersecurity who understand TIPS challenges related to the research, and who can involve typically hard-to-reach groups who may or may not be in clinical care, ensuring wide engagement and subsequent impact. As such, the work plan is fundamentally co-created. Multiple perspectives are synthesised through research-through-design activities; design prototypes become a basis for exploring opportunities to understand, and innovate. Our aspiration is to deliver foundational understanding of TIPs concerns for stigmatised populations, and to enable the trusted sharing of data through the inclusive design and evaluation of new systems and services. This work will inform ethical frameworks and responsible digital innovation strategies for healthcare provision to enable all citizens to live and age well in society.
The importance of quality of life and well-being for those living with long-term conditions (LTCs) is increasingly recognised by both healthcare providers and citizens, as is the potential for patient-generated (health-related) data to be used to improve healthcare provision and the management of such conditions. However, the communication of individuals' personal data about their 'health' and 'lifestyle', and the inferences that may be made from it, are inextricably linked to identity management. Therefore, the disclosure and processing of such data raises critical TIPS issues for those who may fear discrimination or experience stigma.
This project seeks to identify and address fundamental TIPS challenges faced by those managing stigmatised LTCs in managing their health and interacting with care services, peer support networks, and private organisations. We will develop new tools providing people with opportunity and choice for managing the trusted sharing of their self-generated data with others. We will envision innovative service propositions that are grounded in a new empirical understanding of challenging but highly relevant contexts for sharing these data.
Through effective treatment, the Human Immunodeficiency Virus (HIV) has been transformed to a LTC with normal life expectancy, but remains highly-stigmatised. HIV therefore provides a specific clinical and social context where sharing personal data presents significant design challenges related to addressing TIPS concerns and barriers.
Our ambitious work programme brings together experts in the HIV sector, Public Health, Human Computer Interaction Design, Health Psychology, Health Informatics and Applied Ethics to: envision, develop and evaluate pioneering trusted new tools that empower individuals to use personal data for self-managing their condition, to live and age well with HIV; understand what it means to share these data with particular others, including healthcare providers, communities, and private organisations; and to identify ethical issues associated with TIPS for managing stigma and well-being. Whilst our work plan focuses on people living with HIV, it ensures that insights from studying this population has transferability to other stigmatised LTCs such as mental health conditions.
Our participatory approach engages academic and non-academic partners and stakeholders in defining the research, in conducting studies, and making sense of the results. This includes: members of the HIV peer community and their advocates; academic clinicians; experts in public health surveillance and cybersecurity who understand TIPS challenges related to the research, and who can involve typically hard-to-reach groups who may or may not be in clinical care, ensuring wide engagement and subsequent impact. As such, the work plan is fundamentally co-created. Multiple perspectives are synthesised through research-through-design activities; design prototypes become a basis for exploring opportunities to understand, and innovate. Our aspiration is to deliver foundational understanding of TIPs concerns for stigmatised populations, and to enable the trusted sharing of data through the inclusive design and evaluation of new systems and services. This work will inform ethical frameworks and responsible digital innovation strategies for healthcare provision to enable all citizens to live and age well in society.
Planned Impact
This research was co-created with our partners, collaborating consultants and stakeholders. We aim to deliver impact in three main ways:
- Deliver foundational knowledge about the Trust, Identity, Privacy and Security (TIPS) concerns that People Living with HIV (PLHIV) and others with potentially stigmatised long term conditions (LTCs) have about sharing personal health data, to inform community communication and healthcare management;
- Deliver new trusted prototype systems, service concepts and design guidelines that open up new strategic directions for the co-design of community and healthcare technologies, and in doing so facilitate increased engagement and inclusion;
- Review and refine ethical frameworks that ensure responsive healthcare innovation attends fully to the TIPS concerns raised by stigmatised groups in respect of their personal health data sharing.
The project will additionally foster trusted collaborative networks between academic and non-academic partners to support knowledge exchange (KE).
The main beneficiaries of this research follow.
People living with potentially stigmatised LTCS including PLHIV: Our research will identify and address the TIPS issues these groups have with the sharing patient-generated data (PGData) between healthcare professionals, peers, and others including private organisations. Insights from our work will shape how PGData can be shared safely and securely and in ways that support this group, whilst at the same time informing healthcare innovation strategies for trusted and secure sharing across multiple contexts. By developing and evaluating responsible prototype data-sharing tools (both for within the HIV community and for patient-clinician consultations) we will explore how to design to prevent exclusion of this group from the benefits of digital communities and the digital economy in general. This in turn has the potential to enhance well-being, improve clinical outcomes, and inform population health.
Advocacy groups: For PLHIV and other SLTC. The Terrence Higgins Trust (THT), UK-CAB, an HIV peer advocacy group, and the National Aids Trust will directly benefit from being active strategic advisory board members and consultants on the project. A peer-researcher employed by THT will be involved in conducting, and disseminating the results of, research activities, building networks of interest, and supporting engagement to raise awareness and understanding of TIPS concerns within peer communities and wider publics. Other advocacy groups will benefit from the findings to direct their future data sharing strategies and policies.
Clinicians treating PLHIV and other stigmatised LTCs: The prototype data sharing tool will provide valuable PGData in a format that does not cognitively overload clinicians but will facilitate the delivery of patient-centred care.
Policy makers and practitioners: This group will benefit from the detailed exploration of TIPS concerns that PLHIV have about sharing PGData in different contexts. In particular, we see this research influencing how personal health records and community health platforms are created to optimise trust, privacy and security whilst also facilitating effective sharing. Our findings will further inform how sharing personal health data is developed at scale within Ethical Frameworks and how TIPS concerns differ depending on the context of sharing (e.g. whether it is for Public Health Surveillance or a business).
Public Health organisations: these will benefit from understanding the TIPS concerns of PLHIV and others with LTCs around sharing PGData and other barriers to sharing information at scale.
Private organisations: Companies will benefit by fostering networks with key experts (SAB members) in HIV services and healthcare to gain insight into the potential value of personal health data sharing that may signal new competitive markets for supportive products and services.
- Deliver foundational knowledge about the Trust, Identity, Privacy and Security (TIPS) concerns that People Living with HIV (PLHIV) and others with potentially stigmatised long term conditions (LTCs) have about sharing personal health data, to inform community communication and healthcare management;
- Deliver new trusted prototype systems, service concepts and design guidelines that open up new strategic directions for the co-design of community and healthcare technologies, and in doing so facilitate increased engagement and inclusion;
- Review and refine ethical frameworks that ensure responsive healthcare innovation attends fully to the TIPS concerns raised by stigmatised groups in respect of their personal health data sharing.
The project will additionally foster trusted collaborative networks between academic and non-academic partners to support knowledge exchange (KE).
The main beneficiaries of this research follow.
People living with potentially stigmatised LTCS including PLHIV: Our research will identify and address the TIPS issues these groups have with the sharing patient-generated data (PGData) between healthcare professionals, peers, and others including private organisations. Insights from our work will shape how PGData can be shared safely and securely and in ways that support this group, whilst at the same time informing healthcare innovation strategies for trusted and secure sharing across multiple contexts. By developing and evaluating responsible prototype data-sharing tools (both for within the HIV community and for patient-clinician consultations) we will explore how to design to prevent exclusion of this group from the benefits of digital communities and the digital economy in general. This in turn has the potential to enhance well-being, improve clinical outcomes, and inform population health.
Advocacy groups: For PLHIV and other SLTC. The Terrence Higgins Trust (THT), UK-CAB, an HIV peer advocacy group, and the National Aids Trust will directly benefit from being active strategic advisory board members and consultants on the project. A peer-researcher employed by THT will be involved in conducting, and disseminating the results of, research activities, building networks of interest, and supporting engagement to raise awareness and understanding of TIPS concerns within peer communities and wider publics. Other advocacy groups will benefit from the findings to direct their future data sharing strategies and policies.
Clinicians treating PLHIV and other stigmatised LTCs: The prototype data sharing tool will provide valuable PGData in a format that does not cognitively overload clinicians but will facilitate the delivery of patient-centred care.
Policy makers and practitioners: This group will benefit from the detailed exploration of TIPS concerns that PLHIV have about sharing PGData in different contexts. In particular, we see this research influencing how personal health records and community health platforms are created to optimise trust, privacy and security whilst also facilitating effective sharing. Our findings will further inform how sharing personal health data is developed at scale within Ethical Frameworks and how TIPS concerns differ depending on the context of sharing (e.g. whether it is for Public Health Surveillance or a business).
Public Health organisations: these will benefit from understanding the TIPS concerns of PLHIV and others with LTCs around sharing PGData and other barriers to sharing information at scale.
Private organisations: Companies will benefit by fostering networks with key experts (SAB members) in HIV services and healthcare to gain insight into the potential value of personal health data sharing that may signal new competitive markets for supportive products and services.
Organisations
Publications
Brown R
(2023)
Health stigma on Twitter: investigating the prevalence and type of stigma communication in tweets about different conditions and disorders
in Frontiers in Communication
Bussone A
(2020)
Trust, Identity, Privacy, and Security Considerations for Designing a Peer Data Sharing Platform Between People Living With HIV
in Proceedings of the ACM on Human-Computer Interaction
Claisse C
(2021)
Co-Creative Visual Poetic Inquiry for communicating lived experience of HIV self-management and self-care
in Design for Health
Hewitt C
(2021)
Patient-generated data in the management of HIV: a scoping review
in BMJ Open
Hewitt C
(2020)
Patient-generated data in the management of HIV: a review
in HIV MEDICINE
| Description | Key Findings: The INTUIT team have delivered new research evidence (secondary data analysis plus empirical findings) about the following topics: * Understanding Trust, Identity, Privacy, and Security (TIPS) Considerations for designing digital tools for peer data sharing between people living with HIV - focusing on perspectives of those with lived experience of HIV; * Understanding individuals' practices of Self-care to Inform the design of supportive health technologies for living and ageing well with HIV; * Understanding co-creative methods combining poetry and visual design for communicating individuals' emotional experience of living with HIV; * Understanding Patient-generated data (PGData) in the management of HIV, from healthcare professional (HCP) and service user (SU)perspectives; * Understanding the attitudes and behaviours of people living with long term health conditions (LTHCs) with respect to sharing health and lifestyle data; * Understanding stakeholder values and ethical concerns about patient-generated data for supporting personal health management. Highlights: Despite those living with LTHCs reporting high levels of daily recording of health and lifestyle data, these data are rarely shared with others. Three quarters of the sample of 250 UK adults reported recording information about their health and lifestyle on a daily basis. However, two thirds reported never or rarely sharing this information with others. Those SUs with LTHCs are most willing to share with their HCPs, but the overall low levels of sharing suggest a potential missed opportunity for public health professionals to gather valuable information that may provide key insights for improving care at a population level. TIPS concerns were considered to be 'very important' by those with LTHCs when deciding whether or not to share self-generated health and lifestyle data with others. From TIPS, personal security concerns were found to present the greatest barrier to sharing; and security has been highlighted as a key desired feature for digital platforms that facilitate the sharing of health and lifestyle data with others. This has direct implications for the design of digital tools that look to facilitate the effective sharing of self-generated health and lifestyle data, and suggests that prioritising dependable security features is likely to encourage sharing. Experiences and perceptions of stigma as a consequence of a person's condition(s) were strongly associated with increased levels of perceived risk relevant to sharing personal health and lifestyle data with others. Of those living with a LTHC, 58% reported experiencing stigma associated with their condition. The greatest perceived risk from sharing with others was the potential for future harm to their social relationships. Participants were most concerned about the potential harm that may be caused to one's social relationships as a result of sharing health and lifestyle data with others. Considering implications for digital inequalities, data privacy and security within HIV care: A qualitative clinical study in the UK (n = <20) evidenced a need for longitudinal data on PGData use within HIV in a variety of settings with a broad range of users, including impact on clinical outcomes. This will allow greater understanding of the role of PGData use in improving the health and well-being of people living with HIV, which is increasingly pertinent as digital healthcare becomes more widespread as a result of COVID-19. Understanding the Barriers and Facilitators to Sharing PGData Using Digital Technology for People Living With Long-Term Health Conditions (including HIV): A thorough analysis of selected articles for a Narrative Review found that issues surrounding trust, identity, privacy and security clearly present barriers to the sharing of patient-generated data across multiple sharing contexts. The presence of enacted stigma also acts as a barrier to sharing across multiple settings. We found that the majority of literature focuses on clinical settings with relatively little attention being given to sharing with third parties. Finally, we suggest the need for more solution-based research to overcome the discussed barriers to sharing. On Designing a Peer Data Sharing Platform Between People Living With HIV: a mixed methods study with people living with HIV in the UK showed that (n = <20) participants were highly sophisticated in their understanding of trust and in their requirements for robust privacy and security. They indicated willingness to share digital identity attributes, including gender, age, medical history, health and well-being data, but not details that could reveal their personal identity. Participants called for TIPS measures to foster and to sustain responsible data sharing within their community. These findings can inform the development of trustworthy and secure digital platforms that enable people living with HIV to share data with their peers and provide insights for researchers who wish to facilitate data sharing in other communities with stigmatised health conditions. A qualitative study investigating daily practices of Self-care by (n = <20) UK adults living with HIV, illuminated their routines, experiences, needs and concerns, informing Self-care technology design to support living well. The study evidenced how digital tools for self-managing health do not meet the complex needs of those living with long-term conditions, especially those from marginalised communities. On methodological Innovation: Co-Creative Visual Poetic Inquiry was developed for communicating lived experience of HIV self-management and self-care with (n = <20) adults with HIV, and was found to be effective for emotional and empathetic engagement with represented research participants and stakeholders. |
| Exploitation Route | Implications for the design of digital applications for use by people living with HIV and other long-term conditions to support self-management of their condition, self-care, and peer support; Adoption of methods and resources by partnering HIV organisations and representatives; Policy roundtable opportunity with partnering organisations to consider implications of findings. Two examples of impact being taken forward by others in future research agenda setting: • A linked study partnering with Youth Committee Members of Children's HIV Association (CHIVA) led to framing a research agenda for young people (different to adult population of current INTUIT project); insights were presented at the CHIVA Annual Conference (2020). CHIVA have since been using resources designed during the INTUIT project (i.e. a diary design to support HIV self-management) with their service users in (i) a longitudinal efficacy study and (ii) to support their communication and training activities with service users. • Contribution to World Economic Forum (WEF) Policy Initiatives: 'Unlocking Trusted Value' (2010-20) - World Economic Forum project. INTUIT Co-I Luger contributed expertise to an international exploration of Data Trusts and Digital Agency as keys to consumer empowerment. This resulted in a WHITE Paper where INTUIT was cited as a case study to illustrate the need for collective models of consent: 'Redesigning Data Privacy: Reimagining Notice and Consent for human technology interaction'. The paper highlighted the importance of INTUIT as it tries to understand how consent might work within the content of collective interest. INTUIT was used as a grounded example of work in progress addressing these issues. The report is available to view at this link: http://www3.weforum.org/docs/WEF_Redesigning_Data_Privacy_Report_2020.pdf. The contribution to WEF policy initiatives is continuing through active contribution to the WEF task force 'Data Intermediaries: Trusted Digital Agency' and related events. INTUIT work was discussed at the WEF Sustainable Development Impact Summit - see https://www.weforum.org/projects/data-intermediaries-trusted-digital-agency. Related outputs may be used in further policy informing activities. |
| Sectors | Communities and Social Services/Policy,Creative Economy,Digital/Communication/Information Technologies (including Software),Healthcare,Government, Democracy and Justice,Security and Diplomacy |
| URL | https://intuitproject.org/ |
| Description | Two examples of impact being taken forward by others in future research agenda setting: * A linked early impact study partnering with Youth Committee Members of Children's HIV Association (CHIVA) led to framing a research agenda for young people (different to adult population of current INTUIT project); insights were presented at the CHIVA Annual Conference (2020). * Contribution to World Economic Forum (WEF) Policy Initiatives: INTUIT team members contributed to the WEF report 'Redesigning Data Privacy: Reimagining Notice and Consent for human technology interaction', highlighting the importance of INTUIT as it tries to understand how consent might work within the content of collective interest. INTUIT was used as a grounded example of work in progress addressing these issues. The report is available to view at this link: http://www3.weforum.org/docs/WEF_Redesigning_Data_Privacy_Report_2020.pdf. The contribution to WEF policy initiatives is continuing through active contribution to the WEF taskforce 'Data Intermediaries: Trusted Digital Agency'. A third impact opportunity was created in 2022 and is currently being pursued (2023) for INTUIT clinical study findings to inform the development of HIV PROMs resources at a partnering NHS Trust hospital in Newcastle upon Tyne. |
| First Year Of Impact | 2020 |
| Sector | Communities and Social Services/Policy,Creative Economy,Digital/Communication/Information Technologies (including Software),Education,Healthcare,Other |
| Impact Types | Cultural,Societal |
| Description | Contribution to World Economic Forum (WEF) Policy Initiatives |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Citation in other policy documents |
| URL | https://www3.weforum.org/docs/WEF_Redesigning_Data_Privacy_Report_2020.pdf |
| Description | AGENCY: Assuring Citizen Agency in a World with Complex Online Harms |
| Amount | £2,793,095 (GBP) |
| Funding ID | EP/W032481/1 |
| Organisation | Engineering and Physical Sciences Research Council (EPSRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 04/2022 |
| End | 03/2025 |
| Description | Centre for Digital Citizens - Next Stage Digital Economy Centre |
| Amount | £3,797,252 (GBP) |
| Funding ID | EP/T022582/1 |
| Organisation | Engineering and Physical Sciences Research Council (EPSRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 11/2020 |
| End | 10/2025 |
| Title | The CHIME mobile application to support self-tracking of personal health and wellbeing |
| Description | The CHIME app runs on iOS and Android smartphones and enables users to securely and privately track personal health and wellbeing data. The app provides a built in trackers for sleep, exercise and mood and users can add custom trackers to record other personal data. The app enables users to explore how their personal data has varied over time and annotate any patterns they identify. |
| Type Of Technology | Webtool/Application |
| Year Produced | 2021 |
| Open Source License? | Yes |
| Impact | It was used to support a research study with a partnering organisation, Terrence Higgins Trust. The data is currently being analysed so it is too early to report impacts. |
| URL | https://intuitproject.org/chime/ |
| Description | 'Challenging Boundaries': Live Project Brief for MA Communication Design, School of Design, Northumbria University |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | We were invited by the Course Leader and Module Leader to set a brief for the students as part of their course, with engagements running between February and March 2021. Students responded to a brief related to this grant, and presented design projects to an invited panel of project stakeholders and project team members. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.northumbria.ac.uk/study-at-northumbria/courses/ma-communication-design-dtfcde6/?gclid=Cj... |
| Description | Community Consultation - Fast Cities Event, Bristol |
| 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 | INTUIT team members attended a Bristol Fast Track cities event run by Brigstowe HIV charity on 22 October, 2019, with the aim to raise the visibility and profile of the project and foster new stakeholder links for potential future participation in the work and potential future collaborations. This event was a community consultation on Bristol's approach to HIV prevention and treatment. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Conference Workshop Position Paper: Exploring the sensitivities of researching people living with HIV |
| 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 | Four members of the INTUIT project team prepared a workshop position paper that was accepted for presentation at an ACM CHI Conference 2019 workshop in Glasgow UK: 'W33: Sensitive Research, Practice and Design in HCI'. The workshop explored the methodological, ethical, and emotional challenges of sensitive research in HCI, including risky research for participants or risks to practitioners. The workshop aimed to build stronger community for those in risky research in CHI, sharing knowledge and methods, and facilitating communications between academic research and industry. The position paper raised discussion on how researching technology design for people living with HIV often involves the discussion of sensitive topics, and reflected on the practical challenges of conducting ethically responsible research. The work aimed to contribute to discourse in the field of Human Computer Interaction (HCI) on best practices for researching sensitive subjects. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://chi2019.acm.org/accepted-workshops/#W33 |
| Description | Creative methods support young people in dialogue about self-managing HIV (Confidential Location) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Third sector organisations |
| Results and Impact | INTUIT team members conducted an engagement workshop with the Children's HIV Association (CHIVA) and its Youth Committee (CYC). We were asked to use the creative methods previously developed for participant engagement in INTUIT to prompt the CYC members to discuss the self-management of HIV in relation to wellbeing, and how young people self-report on this to healthcare professionals (HCPs). This session was run ahead of the CHIVA Annual Conference, and aimed to invite reflection by the CYC members on what young people may find important to talk about with HCPs to support their wellbeing in daily life, grounded in their own lived experiences. It further aimed to help engage the young people in developing youth-focused Patient Reported Outcome Measures (PROMs) that consider what it is like to be young and grow up with HIV. University ethical approval was gained for conducting this activity in partnership with Terrence Higgins Trust and CHIVA. Ten young people living with HIV took part (aged between 15 to 21 years), and there was a broad diversity across geographical location and ethnicity. The workshop successfully enabled the CYC members to engage in discussion on youth-related PROMS, and it enabled INTUIT researchers to gain understanding of young people's experiences living with HIV, which in turn informs our work with adult populations engaged through INTUIT. The workshop also forms an early impact study from INTUIT, exploring how the creative methods we have used with adults may be used with young people. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://intuitproject.org/2020/02/26/early-project-impact-creative-methods-support-young-people-in-d... |
| Description | Embedding Principles of Responsible Research Innovation: Presentation to ORBIT at Oxford University |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Professional Practitioners |
| Results and Impact | The INTUIT work programme was presented by academic team members to team members of ORBIT (the Observatory for Responsible Research and Innovation) - see https://www.orbit-rri.org/ - on 25th January 2019. The aim was to describe how principles of Responsible Research Innovation (RRI) are embedded in INTUIT, to discuss INTUIT as a potential case study of applying RRI in ICT, and to foster knowledge exchange and critical discussion on best practice as the project progresses (impact monitoring). |
| Year(s) Of Engagement Activity | 2019 |
| Description | Invited Talk at Department of Health and Social Care, London |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | An invited presentation about the INTUIT research programme (entitled 'On Ethically Responsible Technology Innovation in Digital Healthcare') was given at the Department of Health and Social Care, as part of the Science Seminar series. Using INTUIT as a case study, the talk focused on the challenges posed by intelligent data-driven systems, and how we might design more ethical systems and interactions. Early findings from INTUIT studies were presented. The talk highlighted insights from an analysis of current ethical frameworks, prompting a seminar discussion about how systems for sharing personal health data should ensure effective informing, and could support users in making voluntary choices about how and when they share information. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Invited Talk: Ethical Responsiveness & Longer Term Thinking in Design |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | The INTUIT research programme was presented at an Open Day hosted by HCID at City, University of London. The talk focused on reporting how ethical practice is envisioned and applied in INTUIT studies. The aim was to contribute to academic discourse and debate in the field of Human Computer Interaction (HCI) on how research practices of co-creation and co-design address potential digital divides and concerns for the value-sensitive design of new technology applications. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://hcidopenday.co.uk/ |
| Description | Invited blog post publication for project stakeholder organisation |
| 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 | Three researchers in the INTUIT project team co-wrote a blog post for Terrence Higgins Trust, a leading HIV charitable organisation in the UK, with profile and reach. This work was coordinated with the Trust's Media and Communication team and was published on 14th July 2021. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.tht.org.uk/news/using-artistic-approaches-hiv-research-about-self-care |
| Description | Invited talk at UCL Interaction Centre (UCLIC) in London, for Research Seminar Series |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | Invited Guest Lecture entitled "Design for Being Online through Life Transitions" and presenting published research findings from this project. |
| Year(s) Of Engagement Activity | 2017 |
| Description | North East and North Cumbria HIV Network Annual General Meeting 2023 |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | The event was an AGM for a professional regional network, that formed a symposium with formal presentations and knowledge exchange between members and stakeholders. The area of expertise within the network is in HIV prevention, treatment and care, which is highly related to the research award. Prof. Abigail Durrant (PI) was invited to attend and present findings (already published) from the INTUIT project to an audience that included stakeholders who are new to the research, and representatives from partnering organisations and research participants. The presentation will support impact activities related to the project, currently taking place in parallel. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Presentation at PACTMAN Symposium: Trust, Privacy and Consent in Future Pervasive Environments |
| 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 | The INTUIT team presented a poster about the work programme at the PACTMAN symposium held on 10th - 11th December 2018. The symposium, also involving workshop activities and invited talks, focused on bringing together design researchers and practitioners working on projects funded by EPSRC TIPS calls. A key aim of was to build a community of UK TIPS researchers. The event was valuable for making connections to researchers working on TIPS, and building academic networks, and was an early knowledge exchange activity for INTUIT. |
| Year(s) Of Engagement Activity | 2018 |
| URL | https://pactman.uk/building-a-community-of-uk-tips-researchers-2/ |
| Description | Talk at British Sociological Association Medical Sociology Conference, Lancaster. |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | E.J Nicholls, K. Lloyd, S. Tariq, J. Gibbs, C. Claisse, A. Durrant (2022) Personal Health Data and HIV Clinical Care: Beyond Discipline vs. Empowerment. Presented at: British Sociological Association Medical Sociology Conference, Lancaster. This talk led to requests for further information about the study and is informing a manuscript. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Workshop Series (2019 to 2022) on Inclusive Privacy and Security at the Symposium on Usable Privacy and Security (SOUPS) |
| 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 | From 2019 to 2022 we have ran a workshop on inclusive privacy and security at the Symposium on usable privacy and security. 2019 was the first year we explored inclusivity in a broader sense than universal design and inclusion of people with disabilities. This year we led with understand the needs of a more diverse user population who may have more specific needs for privacy, such as people living with conditions such as HIV. During this workshops, we used scenarios created by the team to explore how to manage privacy and security when generating health data which was to be purposefully shared with a limited audience. This introduced the idea of personas and scenarios to explore requirements to the cybersecurity community. |
| Year(s) Of Engagement Activity | 2019,2020,2021,2022 |
| URL | https://www.usenix.org/conference/soups2019 |