Understanding and building trust in health data sharing for research
Research type
Research Study
Full title
Assembling the Data Jigsaw in Greater Manchester: improving MSK research to advance patient care and inform patient policy using Patient Generated Health Data (Work Package 3.1 – Understanding and building public and patient trust in health data sharing for research to improve diagnosis, treatment and services for people with musculoskeletal conditions)
IRAS ID
309390
Contact name
William Dixon
Contact email
Sponsor organisation
University of Manchester
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Previous engagement and research has shown that most patients support confidential re-use of health data; although there have also been concerns regarding security, privacy, and control of data. Transparency and public trust in data sharing is acknowledged as fundamental to enabling and sustaining data sharing for service improvement and research.
The research proposed in this application will answer the following questions:
1. What are the perspectives of patients on data sharing, governance and mechanisms (including communication and consent) to develop and sustain public trust for the use of personal health data for musculoskeletal research amongst people from diverse communities?
2. How can we co-design appropriate methods and materials (eg website; inserts in clinic appointments; events; mass media) to inform the public of key issues around data sharing and Jigsaw research?
3. How useful are co-designed communications methods and materials, how do they function and what impact do they have?
This is a qualitative research study utilising qualitative semi-structured interviews and focus groups in three phases. In Phase 1, a diverse range of participants with a range of musculoskeletal conditions, including both patients and carers (where applicable) will be invited to take part in an interview or focus group online, at a local community hall, or at the University of Manchester, to understand both personal and community context and associated implications for data sharing and requirements for public trust and information and communication on how data is used. In Phase 2, we will work with our PPI advisory group and a communications company (True North) to co-design and iterative development of appropriate methods and materials to inform the public of key issues around data sharing and Jigsaw research. In Phase 3, we will evaluate the functioning, usefulness and impact of co-designed communications methods using qualitative focus groups and conduct up to 4 follow-up focus groups with participants from initial focus groups and workshops above in the locations stated above, as well as additional key stakeholders to evaluate the use and impact of the materials above. The research project will run for 2 years, starting March 2022 and completing in February 2024.Lay summary of study results: Background: Although many people support using their anonymised health data for research, there are concerns about privacy, safety, and security, and low awareness of how the data are used.
The study aimed to understand and increase public and patient trust in sharing health data for research to improve diagnosis, treatment, and services for muscle and joint conditions.Objective:
• To understand and increase public and patient trust in sharing health data for research.
• To develop a public notification campaign about the research.
Methods:
• The study took place in Greater Manchester from May 2022 to February 2024.
• Researchers listened to the views of 48 participants with muscle and joint conditions or symptoms (including 3 carers). The participant sample included men and women of different ages, ethnic, and socioeconomic backgrounds. Participants were recruited through social media, Patient and Public Involvement and Engagement (PPIE) health research networks, local advertisements, community groups and word of mouth.
• To gather their views and experiences, researchers carried out 20 semi-structured interviews and held 8 focus groups. Views on sharing health data, including how data is kept safe, and how to communicate more widely with patients and the public about data sharing were requested.
• A presentation about the use of health data for research was used to generate discussion.
• The study team also worked in partnership with a group of five patients with muscle and joint conditions throughout the research.
• Building on the outputs above, the study team worked with a communication agency, True North, to design and deliver a public notification campaign in the area where patients’ data were being used for research.
Results:
Respondents supported sharing their health data for research but were unaware of how electronic health records are used.
Concerns about data security and governance, especially with external companies and social care records, were noted.
Project examples from the Data Jigsaw programme were positively viewed once participants understood how their data improved patient care. A range of different methods to develop and maintain trust were considered necessary by participants.
Participants requested information on data management, data access and the NHS national data opt-out – which allows a patient to choose if they do not want their confidential information to be used for purposes beyond their care and treatment – for example for research.
In-person dialogue with communities was considered important alongside other forms of communication.
Conclusions:
• Transparency and public awareness about sharing health data for research are crucial.
• Providing targeted information within affected communities with accessible messages and community-based dialogue can engage residents more effectively and help to build and maintain public trust.
• Findings are also relevant to other conditions beyond muscle and joint conditions making the findings significant to a much wider community.
Sponsor: The University of Manchester
Acknowledgements:
Thank you to all study participants including the public and patient involvement and engagement group for their input throughout the study, members of community organisations, patients and members of the public who supported the work.
Funded by The Nuffield Foundation (grant OBF/43995).
Also supported by the Centre for Epidemiology Versus Arthritis (grant 21755) and further supported by the National Institute for Health and Care (National Institute for Health and Care Research, NIHR) Manchester Biomedical Research Centre (grant NIHR203308).
Publication: https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fdoi.org%252F10.2196%252F53024%2FNBTI%2FZp67AQ%2FAQ%2Fab2ea6c1-380f-4488-a524-7e1c1b6f7908%2F1%2F6Ki1mSPGnN&data=05%7C02%7Cbloomsbury.rec%40hra.nhs.uk%7Cd0effb2f62df4996621608dd58099e25%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638763563191989895%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=LxyrI3LM5%2BPe%2Fvq2YefLb29IWYDsk4MOZA3DS%2BhYW%2BI%3D&reserved=0REC name
London - Bloomsbury Research Ethics Committee
REC reference
22/LO/0183
Date of REC Opinion
5 May 2022
REC opinion
Further Information Favourable Opinion