The Scottish eHealth Informatics Research Centre
Lead Research Organisation:
University of Dundee
Department Name: UNLISTED
Abstract
Abstracts are not currently available in GtR for all funded research. This is normally because the abstract was not required at the time of proposal submission, but may be because it included sensitive information such as personal details.
Technical Summary
Background: The four health informatics research centres (HIRCs) were developed in isolation from one another. At their collective birth (March 2013), however, the Centres wish to grasp the opportunity to multiply their activities by creating a single UK institute (the ‘Farr Institute for Health Informatics Research’).
Vision: To harness the knowledge from health records data to improve the health of patients and communities by establishing a pre-eminent interdisciplinary UK health informatics research institute. The Farr Institute will be concentrated in the four Centres, act as the nexus of the wider UK Institute network and make the UK the come-to place for data-intensive, translational health science.
Aim: The aim of the Farr Institute is to integrate and scale, at the UK level, the work of the four Centres. The Institute will thus provide a new UK-wide focus for each of the workstreams in the Centres: e-infrastructure, research, capacity and public engagement.
Objectives for the capital spend
(i) E-Infrastructure: To establish an outstanding UK e-infrastructure across the Centres. Specifically by establishing a co-ordinated approach to safe havens for the storage and analysis of detailed, individual-level health data, and the formation of digital laboratories for larger scale research across the Centres and their collaborators.
(ii) Research: To enhance research productivity across the UK by widening access to well-described datasets through a prominent UK-wide portal, bringing new datasets to the research community and enhancing communication. The Institute will widen research partnerships beyond the four Centres, developing strategic UK links between academia, industry and the NHS.
(iii) Capacity: To develop a UK-wide co-ordinated offering for training and capacity development to address the acute skills shortage in health informatics research.
(iv) Public engagement: To engage the public and patients across the UK and locally, in a novel range of activities to enhance public trust in the use of health records for research.
Vision: To harness the knowledge from health records data to improve the health of patients and communities by establishing a pre-eminent interdisciplinary UK health informatics research institute. The Farr Institute will be concentrated in the four Centres, act as the nexus of the wider UK Institute network and make the UK the come-to place for data-intensive, translational health science.
Aim: The aim of the Farr Institute is to integrate and scale, at the UK level, the work of the four Centres. The Institute will thus provide a new UK-wide focus for each of the workstreams in the Centres: e-infrastructure, research, capacity and public engagement.
Objectives for the capital spend
(i) E-Infrastructure: To establish an outstanding UK e-infrastructure across the Centres. Specifically by establishing a co-ordinated approach to safe havens for the storage and analysis of detailed, individual-level health data, and the formation of digital laboratories for larger scale research across the Centres and their collaborators.
(ii) Research: To enhance research productivity across the UK by widening access to well-described datasets through a prominent UK-wide portal, bringing new datasets to the research community and enhancing communication. The Institute will widen research partnerships beyond the four Centres, developing strategic UK links between academia, industry and the NHS.
(iii) Capacity: To develop a UK-wide co-ordinated offering for training and capacity development to address the acute skills shortage in health informatics research.
(iv) Public engagement: To engage the public and patients across the UK and locally, in a novel range of activities to enhance public trust in the use of health records for research.
People |
ORCID iD |
| Andrew Morris (Principal Investigator) |
Publications
Taylor J
(2018)
#Deathbedlive: the end-of-life trajectory, reflected in a cancer patient's tweets.
in BMC palliative care
McTaggart S
(2018)
Use of text-mining methods to improve efficiency in the calculation of drug exposure to support pharmacoepidemiology studies.
in International journal of epidemiology
Marryat L
(2018)
Primary schools and the amplification of social differences in child mental health: a population-based cohort study.
in Journal of epidemiology and community health
Hébert HL
(2018)
Cohort Profile: Genetics of Diabetes Audit and Research in Tayside Scotland (GoDARTS).
in International journal of epidemiology
McDonnell L
(2018)
Finding and using routine clinical datasets for observational research and quality improvement
in British Journal of General Practice
Sheikh A
(2018)
RESPIRE: The National Institute for Health Research's (NIHR) Global Respiratory Health Unit
in Journal of Global Health
Turcot V
(2018)
Protein-altering variants associated with body mass index implicate pathways that control energy intake and expenditure in obesity.
in Nature genetics
Flannick J
(2019)
Exome sequencing of 20,791 cases of type 2 diabetes and 24,440 controls.
in Nature
Shah S
(2020)
Genome-wide association and Mendelian randomisation analysis provide insights into the pathogenesis of heart failure.
in Nature communications
Van Zuydam NR
(2020)
Genetic Predisposition to Coronary Artery Disease in Type 2 Diabetes Mellitus.
in Circulation. Genomic and precision medicine
Sebire NJ
(2020)
HDR UK supporting mobilising computable biomedical knowledge in the UK.
in BMJ health & care informatics
Paprica PA
(2020)
Prospective data linkage to facilitate COVID-19 trials - A call to action.
in International journal of population data science
Ensaldo-Carrasco E
(2021)
Patient Safety Incidents and Adverse Events in Ambulatory Dental Care: A Systematic Scoping Review.
in Journal of patient safety
Goodrich JK
(2021)
Determinants of penetrance and variable expressivity in monogenic metabolic conditions across 77,184 exomes.
in Nature communications
Stock SJ
(2021)
The international Perinatal Outcomes in the Pandemic (iPOP) study: protocol.
in Wellcome open research
Ibrahim H
(2021)
Health data poverty: an assailable barrier to equitable digital health care
in The Lancet Digital Health
| Description | Academy of Medical Science |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| URL | http://www.acmedsci.ac.uk/publications/?cat=Workshop%2C+symposium+and+lecture+reports |
| Description | Academy of Medical Science |
| Geographic Reach | National |
| Policy Influence Type | Citation in other policy documents |
| URL | http://www.acmedsci.ac.uk/publications/?cat=Workshop%2C+symposium+and+lecture+reports |
| Description | Guangdong Province FAO |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Description | Guangdong Province FAO return visit |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Description | Guangdong Province Party Secretary visit |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Description | Research Project Supervision for 12 MPH students since 2013 |
| Geographic Reach | Multiple continents/international |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | Each year since 2013, three or four graduating MPH students from the University of Edinburgh's on-campus MPH programme have selected SCPHRP as the venue for conducting their three-month MPH research project, under the active supervision of SCPHRP Fellows and staff. While they are based with us, they also become familiar with how SCPHRP works with its policy and practice stakeholders to move its research into action. This contributes to the research and knowledge transfer skills of these graduates - many of them from abroad -- who are joining the international public health professional workforce. All our student evaluations of their project time with us have been very positive. |
| Description | Scottish Government Short Life Working Group on research training |
| Geographic Reach | National |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Description | Baily Thomas Foundation |
| Amount | £109,310 (GBP) |
| Organisation | Baily Thomas Charitable Fund |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | |
| Description | British Council Iran SEED funding |
| Amount | £5,000 (GBP) |
| Organisation | British Council |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2017 |
| End | 03/2018 |
| Description | British Heart Foundation and Health Data Research UK - £10M National Cardiovascular Data Science Centre |
| Amount | £10,000,000 (GBP) |
| Organisation | British Heart Foundation (BHF) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 09/2019 |
| End | 10/2024 |
| Description | CIHR- Filling for the void: public engagement around a new model for access to research resources |
| Amount | $530,000 (CAD) |
| Funding ID | 367424 |
| Organisation | Canadian Institutes of Health Research |
| Sector | Public |
| Country | Canada |
| Start | |
| Description | Citizen Jury- Use of Guthrie Cards for Research Purposes |
| Amount | £40,000 (GBP) |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | |
| Description | DETECT CANCER EARLY PROGRAMME |
| Amount | £80,000 (GBP) |
| Organisation | NHS Grampian |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2017 |
| End | 03/2019 |
| Description | DEVELOPMENT TRUST |
| Amount | £5,000 (GBP) |
| Organisation | University of Aberdeen |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 01/2017 |
| End | 12/2018 |
| Description | DOES PLACE OF RESIDENCE, DISTANCE AND TRAVELLING TIMES FROM HEALTH SERVICES WITHIN NORTH-EAST SCOTLAND INFLUENCE THE DIAGNOSTIC PATHWAY AND OUTCOMES FROM EIGHT COMMON CANCERS: ANALYSIS OF A LINKED DATASET |
| Amount | £137,669 (GBP) |
| Organisation | Cancer Research UK |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 11/2016 |
| End | 10/2018 |
| Description | Dementia Global Challenge |
| Amount | £9,980 (GBP) |
| Organisation | Government of Scotland |
| Department | Scottish Funding Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 04/2017 |
| End | 04/2018 |
| Description | EMA - Diclofenac pharmacovigilance Study |
| Amount | € 198,854 (EUR) |
| Organisation | European Medicines Agency |
| Sector | Public |
| Country | United Kingdom |
| Start | 06/2017 |
| End | 12/2018 |
| Description | EMA - Hydroxyzine pharmacovigilance study |
| Amount | € 199,384 (EUR) |
| Organisation | European Medicines Agency |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2018 |
| End | 12/2019 |
| Description | FAMILIAL HYPERCHOLESTEROLAEMIA |
| Amount | £840,509 (GBP) |
| Organisation | National Institute for Health and Care Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2017 |
| End | 03/2020 |
| Description | Fast-tracking Health Innovation for NHS Scotland (MRC Confidence in Concept 2017) / R170262-104 |
| Amount | £37,063 (GBP) |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2017 |
| End | 02/2019 |
| Description | Gates Foundation ICODA including Grand Challenges |
| Amount | $4,576,000 (USD) |
| Funding ID | 197296/33701 |
| Organisation | Bill and Melinda Gates Foundation |
| Sector | Charity/Non Profit |
| Country | United States |
| Start | 05/2020 |
| End | 10/2022 |
| Description | Global Challenges Research Fund Networking Grant |
| Amount | £24,956 (GBP) |
| Organisation | Academy of Medical Sciences (AMS) |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2018 |
| End | 02/2019 |
| Description | Improving Health with Environmental Data Call |
| Amount | £60,000 (GBP) |
| Organisation | Natural Environment Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2016 |
| End | 01/2018 |
| Description | Improving Health with Environmental Data Call |
| Amount | £61,532 (GBP) |
| Organisation | Natural Environment Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2016 |
| End | 01/2018 |
| Description | Improving Health with Environmental Data Call |
| Amount | £63,000 (GBP) |
| Organisation | Natural Environment Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 12/2016 |
| End | 01/2018 |
| Description | MODELLING LIFE-COURSE DETERMINANTS OF COGNITIVE RESILIENCE USING ROUTINELY COLLECTED AND COHORT DATA. |
| Amount | £79,922 (GBP) |
| Organisation | Roland Sutton Academic Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 12/2016 |
| End | 11/2018 |
| Description | NHS GRAMPIAN PUBLIC HEALTH |
| Amount | £36,000 (GBP) |
| Organisation | NHS Grampian |
| Sector | Public |
| Country | United Kingdom |
| Start | 11/2017 |
| End | 10/2018 |
| Description | NHS Grampian R&D Pump Priming |
| Amount | £23,502 (GBP) |
| Organisation | NHS Grampian |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2018 |
| End | 02/2019 |
| Description | Phase 1 COVID-19 Data and Connectivity - National Core Study (Phase 1 D&C-NCS) |
| Amount | £15,150,000 (GBP) |
| Funding ID | MC_PC_20058 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2021 |
| End | 09/2022 |
| Description | Roland Sutton Academic Trust |
| Amount | £40,599 (GBP) |
| Organisation | Roland Sutton Academic Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 01/2018 |
| End | 12/2018 |
| Description | Rutherford Fund Fellowship at HDR UK: Risk Prediction in Pharmacoepidemiology |
| Amount | £300,466 (GBP) |
| Funding ID | MR/S003967/1 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 02/2018 |
| End | 02/2021 |
| Description | SPOR Innovative Clinical Trial Multi-Year Grant |
| Amount | $1,065,001 (CAD) |
| Organisation | Canadian Institutes of Health Research |
| Sector | Public |
| Country | Canada |
| Start | 06/2017 |
| End | 06/2021 |
| Description | SULSA Pooling Network |
| Amount | £4,850 (GBP) |
| Organisation | Scottish Universities Life Sciences Alliance |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 09/2017 |
| End | 09/2018 |
| Description | SYMPTOMS ASSOCIATED WITH CANCER [Prof P Hannford] |
| Amount | £415,272 (GBP) |
| Organisation | Cancer Research UK |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 09/2017 |
| Description | Scottish School of Primary Care/Scottish Government |
| Amount | £120,000 (GBP) |
| Organisation | Government of Scotland |
| Sector | Public |
| Country | United Kingdom |
| Start | 06/2017 |
| End | 06/2018 |
| Description | Sustainable health interventions to tackle the emerging threat of antimicrobial resistance (Newton Funds Institutional Links) |
| Amount | £99,909 (GBP) |
| Organisation | British Council |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 03/2017 |
| End | 03/2018 |
| Description | The HDRUK/Turing Wellcome PhD Programme in Health Data Science |
| Amount | £6,005,246 (GBP) |
| Funding ID | 218529/Z/19/Z |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 06/2020 |
| End | 06/2028 |
| Description | The Heath Foundation: Better Care Programme |
| Amount | £500,000 (GBP) |
| Funding ID | 849322 |
| Organisation | The Health Foundation |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 12/2019 |
| End | 03/2022 |
| Description | UKRI trusted and connected Data and Analytics Research Environments, Phase 1 |
| Amount | £1,062,754 (GBP) |
| Funding ID | MC_PC_21005 |
| Organisation | Medical Research Council (MRC) |
| Sector | Public |
| Country | United Kingdom |
| Start | 04/2021 |
| End | 08/2022 |
| Description | Wellcome Trust PhD Programme |
| Amount | £150,000 (GBP) |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 08/2020 |
| End | 09/2024 |
| Description | Wellcome Trust/University of Edinburgh ISSF3 Citizen's Jury on use of Guthrie Cards for Research Purposes |
| Amount | £40,000 (GBP) |
| Organisation | Wellcome Trust |
| Sector | Charity/Non Profit |
| Country | United Kingdom |
| Start | 04/2017 |
| End | 03/2018 |
| Title | NHS National Services Scotland (NSS) national safe haven |
| Description | Hosted by the EPCC provides a secure environment to provide access to researchers for data analysis to anonymised linked data from NSS national data sets. |
| Type Of Material | Data handling & control |
| Year Produced | 2016 |
| Provided To Others? | Yes |
| Impact | Increased the number of data linkage projects which eDRIS can set up and will allow for more automated systems to be developed. Allowed improved governance and security for provisioning and access to national data sets. |
| URL | http://www.farrinstitute.org/news/creating-a-safe-haven-for-health-data |
| Title | The Scottish National Prescribing Information System (PIS) |
| Description | PIS provides summary information on reimbursed medicines from 1993, and individual prescribing and dispensing data since 2009 with the incorporation of the Community Health Index (CHI) number, |
| Type Of Material | Database/Collection of data |
| Year Produced | 2016 |
| Provided To Others? | Yes |
| Impact | The data in PIS is used to enhance decisions about Scottish healthcare to improve the health of the people of Scotland. Several studies using PIS have already been published, for example: Use of antimicrobials and the risk of acquiring a healthcare associated infection Use of direct oral anticoagulants in patients with atrial fibrillation Factors influencing the prescribing of antidepressants The burden of irritable bowel syndrome Enhancing prescribing efficiency in Europe |
| URL | http://www.isdscotland.org/Products-and-Services/eDRIS/ |
| Description | Innovative Healthcare Delivery Programme |
| Organisation | Farr Institute of Health Informatics Research |
| Department | Innovative Healthcare Delivery Programme |
| Country | United Kingdom |
| Sector | Learned Society |
| PI Contribution | The Farr Institute provides resources infrastructure to the IHDP and knowledge and research expertise. Prof Andrew Morris is on the Steering committee. |
| Collaborator Contribution | The aims and objectives of IHDP align with The Farr Institute. The programme brings leadership and focus to realise the vision of harnessing the power of informatics to link NHS Scotland's rich data assets and deliver value rapidly to patients, healthcare professionals, and the wider NHS. All high performing healthcare systems internationally are supported by systematic data collection, collation, analysis, and sharing. NHS Scotland aspires to be recognised as one of those high performing systems and the IHDP has been established to provide the strategic framework to achieve this aim. |
| Impact | Project funded by the Scottish Funding Council and lead by the Data Lab Innovation centre. |
| Start Year | 2015 |
| Description | MQ Transforming mental health through research |
| Organisation | MQ Mental Health Research |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | The Farr Institute have hosted and participated in one day conferences hosted in Edinburgh and Swansea to facilitate the use of linked administrative data in mental health research |
| Collaborator Contribution | Joint Meeting organisers |
| Impact | Meetings in Edinburgh http://www.farrinstitute.org/events-courses/event/mental-health-research-in-the-digital-age and Swansea. |
| Start Year | 2016 |
| Description | Research visit from Prof Gavin Stuart, University of British Columbia |
| Organisation | University of British Columbia |
| Country | Canada |
| Sector | Academic/University |
| PI Contribution | Enhance and strengthen the exchange and sharing of information between the Parties. Facilitate the sharing of experience related to sustainability and strategic policy and enable realization of the value of public data for public benefit |
| Collaborator Contribution | We have hosted Prof Stuart at Farr Scotland and are liaising with NHS Research Scotland to identify suitable collaborations within Scotland. |
| Impact | Research visit has just commenced so no outputs yet. |
| Start Year | 2017 |
| Description | Research visit from Prof Martin Dawes from the University of British Columbia |
| Organisation | University of British Columbia |
| Country | Canada |
| Sector | Academic/University |
| PI Contribution | Farr Scotland hosted a visit by Prof Dawes to as part of a memorandum of understanding between the Government of British Columbia and the Scottish Government to facilitate the sharing of experience related to sustainability and strategic policy and enable realization of the value of public data for public benefit. |
| Collaborator Contribution | Sharing of information to assist in the collaboration between the two governments in data science and precision medicine. |
| Impact | The initiation of collaboration in data science and precision medicine. |
| Start Year | 2017 |
| Description | 'Gearing an entire country for Health Data Science', Royal Society Science Meeting |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | 'Go-DARTS History - Establishing the Go-DARTS cohort' at the Go-DARTS 20th Annual Symposium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | 'Working together to identify and address the issues' at event called 'Grand Challenges in Artificial Intelligence in Clinical Radiology & Clinical Oncology' at the Wellcome Collection |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Industry/Business |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | Attitudes to data linkage in the UK and Sweden |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | This was a Seminar given at the Higher Series of the Centre for Research Ethics & Bioethics (CRB) at the University of Uppsala, Sweden |
| Year(s) Of Engagement Activity | 2017 |
| Description | Big Data in Health (KTN event, Cambridge) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Talk led to networking opportunities and stimulated new collaborative ideas. Support and programme development for the Digital Health Assembly -Open Innovation conference to be held in Feb 2015 partly supported by the Farr Institute. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://researchfunding.sunderland.ac.uk/joint-ict-ktn-health-and-medicines-ktn-event/#.VGNRS_msWSp |
| Description | Celebrating Your Contribution to Scottish Cohort Studies, The Mound, Edinburgh |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | Chair Scottish Government COVID-19 CMO Advisory Group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | N/A |
| Year(s) Of Engagement Activity | 2020,2021,2022 |
| Description | Chair Scottish Government Committee Pandemic Preparedness |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | N/A |
| Year(s) Of Engagement Activity | 2022 |
| Description | Contribution to discussion session on 'Wider informatics - Farr2/HDR UK' at Biomedical Research Directors' Forum 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 | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | Data Linkage Scotland Showcase |
| 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 Farr Institute joined with Administrative Data Research Network and The Urban Big Data Centre to show case ongoing research and explain the role of each organisation. Event attracted professionals and organisations who were not currently using administrative data in research and will lead to greater use of linked administrative data in research. Enquiries received by all organisations. |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://www.farrinstitute.org/news/data-linkage-scotland-showcase-2016 |
| Description | Edinburgh Fringe Festival |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Public/other audiences |
| Results and Impact | Research Fellow Dr Mahiri Aitken performed in a stand up show as part of the 'Cabaret of Dangerous ideas' at the Edinburgh Fringe Festival. Title of show was "Hands Off My Clubcard Just take my DNA!" Explores ideas around: Would you rather researchers were looking at your Clubcard data or your DNA? Is this information personal and private, or a public asset to be used in the "public interest"? |
| Year(s) Of Engagement Activity | 2016 |
| URL | http://www.ed.ac.uk/usher/news-events/events-2016/mhairi-aitken-at-cabaret-of-dangerous-ideas |
| Description | Farr Institute @Scotland Public Panel |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Participants in your research and patient groups |
| Results and Impact | Two workshops have been held with the Public Panel for Farr Institute @ Scotland. The first of these workshops served to introduction to the HeRCs and the Farr Institute and lead to preliminary discussions/reflections on governance issues and the role of public engagement in relation to the Farr Institute. The second meeting focussed on exploring the role that the public panel will play in Farr@Scotland. The 2nd workshop resulted in the production of a statement on the role and value of the panel. This is now on the Farr website. |
| Year(s) Of Engagement Activity | 2014 |
| URL | http://www.farrinstitute.org/centre/Scotland/23_Activities.html |
| Description | Health Data Research UK, the Academy of Medical Sciences and the Collaboration for the Advancement of Sustainable Medical Innovation (CASMI. "Realising patient and NHS benefits from health and care data - from policy to practice" (A report on the meeting held on 22nd January at the Academy of Medical Sciences. |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Health Data Research UK, the Academy of Medical Sciences and the Collaboration for the Advancement of Sustainable Medical Innovation (CASMI. "Realising patient and NHS benefits from health and care data - from policy to practice" (A report on the meeting held on 22nd January at the Academy of Medical Sciences. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Mhairi Aitken, 26th April 2017, " Discrete choice experiment on commercial use of health data" |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Presentation given at the Informatics for Health Conference, Manchester UK |
| Year(s) Of Engagement Activity | 2017 |
| Description | Open Data and the importance of Confidentiality, Control and Public Benefits |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Other audiences |
| Results and Impact | This was the closing Keynote speech at the University of Edinburgh's Dealing with Data conference |
| Year(s) Of Engagement Activity | 2017 |
| URL | https://media.ed.ac.uk/media/0_7172qesr |
| Description | Opening Plenary 'Options and opportunities for diabetes and the 4th industrial revolution', 10th World Congress on Prevention of diabetes and its complications, Edinburgh |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | Improved understanding of the benefits of building a national infrastructure and services for health data research in the UK |
| Year(s) Of Engagement Activity | 2018 |
| Description | PPI-Edinburgh Fringe 2014 |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | Yes |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Talk provoked lively debate amongst audience members who were happy to share their views. A review noted: "I Know What You Ate Last Summer made an intellectual topic accessible in an engaging and thought-provoking discussion". Generated interest in the PPI activities of Farr Institute at Scotland,. Mhairi Aitken has been asked to speak at the Edinburgh International Science Festival April 2015. |
| Year(s) Of Engagement Activity | 2014 |
| URL | https://www.youtube.com/watch?v=wY2_vnt-hJ0 |
| Description | Participant UK Government SAGE |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Policymakers/politicians |
| Results and Impact | Through the Data and Connectivity NCS, HDRUK convened weekly then fortnightly calls bringing together the national health data community to report on emerging insights and data needs. A regular report was submitted to SAGE with most recent research insights and update on health data available via the national TREs |
| Year(s) Of Engagement Activity | 2020,2021,2022 |
| Description | Patient Perspective - The Patient and Public Voice - using big data for public benefit |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | This was a keynote lecture as part of The International Society for Pharmacoepidemiology EuroDurg Conference 2017 |
| Year(s) Of Engagement Activity | 2017 |
| URL | http://eurodurg2017.net/scientific-programme/ |
| Description | Public Debate (Edinburgh) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Public Debate entitled 'Who owns my genome?' discussed ethics and governance issues, public health benefits, awareness raising of issues for general public |
| Year(s) Of Engagement Activity | 2016 |
| Description | Public benefits: a central justification and problematic dimension of health informatics |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Presentation at Informatics for Health Conference, Manchester UK |
| Year(s) Of Engagement Activity | 2017 |
| Description | Public engagement with data science: Reflections on past experiences and future approaches. CRISP Being digital: Digital technologies and citizen-centred approaches to participation, surveillance and privacy |
| 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 | This was a workshop initiated by CRISP Being to discuss digital technologies and citizen-centred approaches to participation, surveillance and privacy |
| Year(s) Of Engagement Activity | 2017 |
| URL | https://www.stir.ac.uk/management/news/events/2017/crispbeingdigitalworkshop/ |
| Description | https://www.ed.ac.uk/centre-genomic-medicine/news-events/news-2017/debate-genome-screening-pandoras-box |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Postgraduate students |
| Results and Impact | This was presented as part of a University of Edinburgh Medical Debate: The motion of the debate was "This house believes that the UK should have whole genome screening". Professor Graeme Laurie, and Professor Sarah Cunningham-Burley, both Farr Scotland argued against the motion. |
| Year(s) Of Engagement Activity | 2017 |
| URL | https://www.ed.ac.uk/centre-genomic-medicine/news-events/news-2017/debate-genome-screening-pandoras-... |