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Informing public policy on health data sharing through Citizens’ Juries

Added Value Case 2021/22

In 2020, in response to the emerging COVID-19 pandemic, the government changed the rules around health data. At that time it was not possible to support the policy changes with public engagement due to the speed at which decisions had to be made.

However, data sharing initiatives established during this period may have value beyond the immediate pandemic response, including for direct care, health research, and service planning.

In June 2020, NIHR ARC Greater Manchester commissioned three Citizens’ Juries that were run online between March and May 2021. We wanted to involve the public in deliberating whether pandemic data sharing initiatives should be continued after the pandemic had ended. Each jury, consisting of 18 adults, sampled to represent a cross-section of the public, spent eight days listening to evidence and deliberating on three national data sharing initiatives. 

Overall, the juries supported the data sharing initiatives introduced during the pandemic and were broadly in favour of them continuing, although they had concerns about how some initiatives had been introduced. Many jurors were concerned that there was lack of transparency about the data sharing initiatives; they thought transparency and governance important, even in a pandemic.

What has changed as a result of our research?

After the three juries had been completed and analysed we held an online workshop (5th July 2021). The workshop was attended by 61 people, including jurors, NHS representatives, the National Data Guardian for Health and Social Care and academics, and we collectively considered the results of the juries and made recommendations for action.  The results of the workshop are available here. 

The Citizens’ Juries were extensively cited by Goldacre and Morley in their April 2022 review, Better, Broader, Safer: Using Health Data for Research and Analysis, commissioned by the Secretary of State for Health and Social Care.

The report advocates the use of secure platforms and transparency to earn public trust, stating that the Citizens’ Juries showed that the public understand the concepts behind robust TREs (Trustworthy Research Environments), and strongly support such work.

Dr Nicola Byrne, the National Data Guardian for Health and Social Care published a blog on the importance of listening and changing and said:

“We were a partner in this jury project as it is essential that the views of members of the public are heard in regard to how health and care data is used. As the NHS and government look beyond the pandemic to how data could be used and shared in the future, it is vital that the findings from these citizens’ juries are taken into account. They must ensure we build trustworthy systems that patients, professionals and the public can have confidence in.”

We presented the jury findings and recommendations to:

The insights from the Citizens’ Juries were used in Greater Manchester to inform public awareness campaigns and to build trust in healthcare data sharing in relation to the Greater Manchester Care Record.

The Summary Care Record Independent Advisory Board have used the jury findings to recommend changes to the Summary Care Record’s communication and public engagement strategies.

The Juries called for more transparency and meaningful public engagement in health data sharing, which has been reinforced by references to these jury findings by the National Data Guardian and in the Goldacre report.

The Unlocking Data partners considered the juries a best practice example for public engagement and planned to use it as a model for their own plans for engaging the public in their regional data integration projects. 
 

 

Next steps

The implementation of learning health systems and the ability to use routinely collected health and care data, under the right circumstances, for rapid research depend on public partnership and trust. We need to build strategies for data sharing that are responsive to public views. 

We are now building on this work to conduct public engagement with wider GM communities that are typically seldom heard.

In collaboration with the NIHR  Greater Manchester Patient Safety and Translational Research Centre (PSTRC), a public advisory panel and the Voluntary and Charity sector are undertaking a follow up study “Health data sharing during Covid-19 – awareness and perspectives of marginalised, disadvantaged and seldom heard communities in Greater Manchester”.

Concerns about health inequalities have been magnified during the pandemic and data sharing is recognised as important for researching and addressing inequalities.

However, there is much more to be done to enable seldom heard voices to be part of public dialogue and governance associates with data sharing. This will be crucial for safeguarding and building trust across diverse communities and especially where people may associate data sharing with personal risks and negative consequences.   
 

More information

 

 

Sue Wood (Head of ARC-GM)

Sue.wood@healthinnovationmanchester.com

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