Working with faith communities can overcome trust barriers to build eye health equity, finds report
- INSIGHT communications team
- 14 hours ago
- 4 min read
Engaging with faith groups to encourage responsible health data sharing could play a critical role in improving eye health outcomes for underserved communities, says a new report that surveyed Christian, Jewish, and Muslim worshippers in London.
The study was developed by researchers at University College London (UCL) in response to widening inequalities in eye health across the UK, particularly for global majority populations (GMPs), who face disproportionately high rates of visual impairment and sight-threatening conditions. GMP groups also remain underrepresented in health data research datasets, such as those used to train medical artificial intelligence (AI) tools. This can be addressed by increasing trust in responsible, culturally sensitive data-sharing practices, the report suggests.
More than 60% of people in England and Wales (71% in London) identify as religious and most people from a global majority background identify as religious (Office of National Statistics, 2021). Informed by this context, the team conducted focus group interviews and education sessions with Christian, Jewish, and Muslim participants to explore knowledge, concerns, and expectations related to data sharing and eye care.
The report found that while faith plays a role in healthcare decisions, concerns over privacy, institutional trust, and tangible community benefits are the primary drivers of attitudes toward health data sharing. Working with communities to address these concerns is critical to helping the UK meet its United Nations Sustainable Development Goals.
One faith group participant commented, “If you’ve got someone you trust that looks like you and sounds like you, whatever faith you are, it works, and there’s a trust there.” The consensus among groups was that they felt a duty to support their community, with participants willing to share health data if it led to innovation and “as long as it’s helping somebody”.
Snapshots from the focus group sessions with Muslim, Christian and Jewish faith groups, which informed the report.
Funded by Reach Alliance, a consortium of universities dedicated to addressing United Nations Sustainable Development Goals, the project identified that the UK is off track on most Sustainable Development Goal targets—including improving health and reducing inequality.
The research was led by five undergraduates and 1 newly qualified medical doctor at UCL School of Medical Sciences, and supervised by faculty at UCL Institute of Ophthalmology. The team also worked with the INSIGHT Health Data Research Hub at Moorfields Eye Hospital NHS Foundation Trust, which is the world’s largest research bio-resource of ophthalmic imaging data linked to clinical records.
Report co-author Abigail Omotosho, a fifth-year UCL medical student, noted: “'Initially, all particpants raised reasonable concerns over lack of transparency in how their data is being used. Promisingly, after sharing our research objectives and completing focus groups, participants expressed more willingness to share their data, ensuring it was protected and used to facilitate healthcare developments.”
Professor of Ophthalmic Health and Care at UCL, Roxanne Crosby-Nwaobi, who co-supervised the research, said: “Our study shows that responsible data sharing—rooted in trust, transparency, cultural awareness and cultural humility—has the potential to contribute meaningfully to reducing eye health inequalities and improving outcomes for GMPs across the UK. We will now be working with faith groups and clinicians to build on our research, aiming to increase awareness of how secure health data sharing works and how it can benefit GMPs.”
As a next step, the researchers will co-create a pilot toolkit, responding directly to the priorities voiced by participants. The toolkit will outline transparent communication practices, culturally competent approaches, and strategies for partnership between healthcare providers and faith communities. It will be validated by faith leaders to ensure cultural relevance and then piloted with clinicians to support effective engagement when discussing data sharing. They will also host an exhibition at UCL Here East in collaboration with community partners to showcase their findings.
Professor of Artificial Medical Intelligence at UCL, Pearse Keane, who co-supervised the project said: “Eye health data that is routinely collected, anonymised and curated through the INSIGHT Hub at Moorfields is helping to advance research in many areas, from new treatments to medical AI innovations in disease detection and management. While the data largely reflects the diversity of London, it is vital that people are confident in sharing their health data and don’t feel the need to opt out. We hope this report and future toolkit will support existing efforts to ensure transparency about how eye care data is collected and used to improve health equity.”
The report, “Good Eye Health Through Responsible Data Sharing” has been published by The Reach Alliance.
About the research
The research involved focus groups with Christian (12 participants across two groups), Jewish (3 participants), and Muslim (12 participants across two groups) communities in London. Pre- and post-focus group surveys assessed changes in knowledge, perceptions, and attitudes. The study was conducted by UCL medical students Marie Cilliers, Anna Hoang, Sancia Lam, Abigail Omotosho, Hiranmayee Sudarsan and Poppy Pierce, under the supervision of Professor Roxanne Crosby-Nwaobi, Polly Rawlinson, and Professor Pearse Keane at UCL Institute of Ophthalmology.
About REACH Alliance
Reach Alliance is a consortium of global universities — with partners in Ghana, South Africa, Mexico, Canada, United States, United Kingdom, Australia, and Singapore — developing the leaders needed to solve urgent local challenges of the hard to reach — those underserved for geographic, administrative, or social reasons. Working in interdisciplinary teams, Reach’s globally minded students use rigorous research methods to identify innovative solutions to climate, public health, and economic challenges. The United Nations Sustainable Development Goals (SDGs) provide inspiration and a guiding framework. Research is conducted in collaboration with local communities and with guidance from university faculty members, building capacity and skills among Reach’s student researchers.
