Health Innovation Manchester: Community engagement and patient research on data sharing from the GM care record

Health Innovation Manchester (HInM) works with innovators to discover, develop and deploy new solutions that improve the health and wellbeing of Greater Manchester’s 2.8m citizens. A key initiative is the Greater Manchester Care Record (GMCR), which is a regional scheme allowing healthcare providers to share patient information.

With nearly all healthcare organisations signed up, the GMCR facilitates monthly access to patient data for over 200,000 individuals. Anonymised data was instrumental for COVID research during the pandemic, and HInM wanted to expand its use for broader health research. To gain regulatory approval, HInM required evidence of patient engagement, particularly from underserved communities.

Project aims

HInM partnered with Nexer to conduct a public consultation on health data sharing.  The project aimed to:

• Understand public awareness of current data-sharing practices.
• Explore public perceptions of the benefits and risks of sharing data for research.
• Identify concerns regarding data anonymisation, access, and use.

HInM also asked us to specifically speak with groups who tend to be excluded from consultations, and who experience inequalities in accessing services.

Methodology

Nexer researchers conducted focus groups and surveys across Greater Manchester, targeting under-represented communities who experience health and digital inequalities We worked with community network leads to meet with groups in their own spaces around Manchester, working with translators when needed. A total of 85 participants were involved:

• 61 individuals participated in focus groups, recruited through networks supporting South Asian women, Black African/Caribbean communities, and older adults.
• 24 individuals completed a survey at a city centre primary care practice.

What we found

Limited awareness: Most participants had low awareness of existing data-sharing practices, and for example weren’t aware of how data was currently being shared or how they could opt-out. Participants interpreted this as a lack of transparency and it made them less accepting of the data-sharing, suggesting that greater communication could increase trust through demonstrating transparency. People wanted to be more informed, to feel they were being given a choice and wanted communications to be more public.

Focus on benefits: Across all groups, a key concern was ensuring that the benefits of data sharing would be shared back with communities and healthcare services. They wanted more reassurance that the outcomes of the data sharing were for the people whose data was being used. We talked about The Five Safes, a list of five protections around access to health data, and participants thought that the “Safe Projects” criterion was especially important, which refers to projects being assessed in terms of likely impacts and only approved if there will be benefit to the NHS.

Data security concerns: Despite explanations of security measures, participants expressed scepticism about the NHS's ability to fully protect data. For the participants, this emphasised the need for there to be adequate benefits to justify what they felt was an inevitable element of risk. Groups also talked about the risk of data being misused, for example if decisions were made using the data hat disadvantaged certain groups or used to justify funding cuts.

Who accesses the data and types of data used: Participants expressed most concern about commercial researchers having access to the data (compared to researchers within the health service or from universities or charities). They were concerned that benefits wouldn't be shared back to patients and the NHS. There was lowest acceptability of children’s data being included, with perceptions of risks around data sharing considered least tolerable when children were involved.

What we shared

We reported back these key findings to help HInM plan future work around health data sharing in GM, demonstrating that good data sharing would involve:

• Sharing what is done with the data, widely and accessibly: Participants wanted to be more actively informed that data sharing is happening in GM.
• Sharing the benefits of the use of the data, back to patients and communities: Participants wanted reassurance that access to the data would mean benefits for patients and services. Hearing about real examples of benefit, and having community members express support for data sharing, both improved perceptions of data sharing.
• Sharing peoples’ concerns, and providing reassurance about how data is used and how services are impacted: Participants wanted to see that data were used responsibly by decision makers, particularly in groups who had experience of their needs being neglected.

Impact

The findings provided valuable insights for HInM to inform their future communications and their ongoing approach to public engagement on data sharing.  Key takeaways included:

• The need for clear and accessible communication on data sharing processes and benefits, particularly drawing on community case studies and community champions.
• The importance of providing examples of benefit ‘on the ground’ , showing how patients themselves would experience improved services.
• Carefully considering where there should be limitations on data access, for example with access to children's data.

By understanding public attitudes, HInM can build trust and encourage greater participation in data sharing for research, leading to improved health outcomes for the citizens of Greater Manchester.