Exploring community experiences of health data sharing
What are we trying to do?
We are a working in collaboration with the NIHR Greater Manchester Patient Safety Translational Research Centre (GM PSTRC), on a project that aims to hear from marginalised, disadvantaged and seldom-heard communities about their views on sharing and using de-identified personal health information (also known as health data). For example, sharing this information across the health and social care organisations to improve communication and the safety of care. We also aim to focus on views about using data for health and care research purposes, such as research to address inequalities.
How are we doing it?
Our research plans have been co-produced with community partners; we will also be working with our community partners to assist with data collection and analysis.
Group discussions (focus groups) are being used to explore what people think about health data sharing; these are being held in-person at local community settings or via online video meetings.
This research aims to explore the views from specific groups whose views are seldom heard across the public health forum. Such views are especially important when considering the implications of data sharing for researching health and care inequalities, because such groups have often been left out of previous discussions.
Why is it important?
Previous engagement and research has shown that most patients support confidential re-use of health data; although there have been concerns about the security, privacy, and control associated with access and the use of Electronic Patient Records (EPRs). During the COVID-19 pandemic there was an overnight transformation on the necessity to share data more widely. This was considered important for enabling the best possible treatment and personalised care for people with COVID-19, but it also enabled new research to be done rapidly using health data. Now feels like the appropriate time for us to learn lessons to support ongoing work based on data sharing, whilst also addressing barriers and any concerns.
Transparency and public trust in data sharing are fundamental to enabling and sustaining data sharing for service improvement and research. However, there is acknowledgement that members of the public often have little knowledge of how their health data are used for research purposes and the lack of transparency and public dialogue is viewed to undermine public trust with implications for future research.
The rapid changes associated with COVID-19 pandemic have implications for citizen engagement. People who have poorer health outcomes, are more likely to be socially excluded, face more health risks and have increased patient safety concerns. However, they may also have more barriers to digital inclusion and have specific concerns about how data are used.
There is much more to be done to enable seldom heard voices to be part of public dialogue and governance associated with data sharing.
In the context of Greater Manchester, the GM Integrated Care Record (GMCR) has been the vehicle to facilitate data sharing for the purpose of improving direct care and research in response to COVID-19. This has associated governance structures to support access to, and use of, data across the GM system, and has embedded public involvement to enable public scrutiny within these governance structures.
Public engagement work has sought to understand the public’s views around the GMCR, and this research study compliments this work to undertake research with a diverse range of communities in GM. The research also complements the Citizens' Juries on Health Data Sharing in a Pandemic work, that was undertaken in May 2021
Who are we working with?
- NIHR Greater Manchester Patient Translational Research Centre (PSTRC)
- Groundswell
- Carribean and African Health Network (CAHN)
- Rethink Rebuild Society (RRSOC)
- Awakening Minds
- A Community Research Advisory Group (CRAG), made up of community partners
More information
Head of ARC-GM
Sue Wood