The ‘Public deliberation in the use of health data’ report comes at a time when it’s more important than ever to unravel complex issues around the safe and secure access and use of health data. The findings of this report will inform our work at Health Data Research UK to collaborate with a range of stakeholders to move forward in enabling the safe access and use of people’s health data to for research.
The OneLondon Citizens’ Summit was reflective of the diverse population of London that brought together around 100 people from across all boroughs to provide detailed recommendations and conditions that they strongly believe should be met. In addition to the proposals set out by the citizens in the OneLondon Summit, these recommendations were explored further with marginalised and vulnerable communities which provides us with invaluable insight in ensuring we are able to build, show and work within a system that is worthy of public trust.
Wide ranging discussions led to recommendations on:
- Access and control in health and care data
- Use of de-personalised data for proactive care
- Use of de-personalised data for planning and improvement in health and care
- Use of de-personalised data for research and development
- Involvement in governance and insight
Reviewing the recommendations in detail will help to further develop and enhance our planned activities around the safe and secure access and use of health data. Amongst others, this can feed into our work on building a fair relationship around the benefits that come out of access to data, work to better communicate and be transparent around the data access process and a need to further involve a diverse group of citizens in governance and oversight.
In addition to these practical recommendations, a key part of the report is the detailed information that guides us through the discussions and debates between the citizens who were involved. A better understanding of the trade-offs they were willing to make and insight into how the recommendations were reached will enable us to work in a way that incorporates what is most important to the public.
Sarah Brooke, Deputy Chair – Public Advisory Board and OneLondon Citizens’ Summit Oversight Group Member says:
“It was an honour to join the Oversight Group for this ambitious project. The depth of discussions I witnessed and that are reflected in the report show so clearly that with the right engagement members of the public can understand complex issues and make good decisions. These results highlight how important the public believe use of health data for research is, but how fundamental it is that trust, transparency and public benefit are demonstrated before access is given.”
This report further emphasises the value that can come from taking the time to engage and involve the public in informed conversations on these key issues and we hope to grow and build on the findings of the deliberative engagement in the future.