Discover-NOW is the Health Data Research Hub for Real World Evidence and aims to revolutionise the way health data is used responsibly for research into treating and preventing disease. They recognise that they will only achieve their ambition and the potential benefit for millions of people if they have the support, confidence, and trust of their communities.

Following the recommendations from the OneLondon Citizens’ Summit in 2020 on the use of health and care data, Discover-NOW established a Citizens Advisory Group (CAG), completely made up of members of the public, to explore, discuss and deliberate key dilemmas facing the Hub.

How were patients and the public involved?

From February to May 2021, Discover-NOW partnered with Ipsos MORI to design and deliver two deliberations on complex issues within health data science for the CAG to reflect on, each consisting of two workshops. A steering group, which also included Citizen Partners, was set up to help ensure that the deliberation process, content, and direction was authentic and reflected the importance of patient and public involvement in the use of health and care data.

The CAG was made up of 40 citizens, who were representative of the North-West London population. Across the deliberations they explored important decisions facing the Hub:

  • ‘What conditions need to be in place for non-NHS partners (universities, commercial organisations, charities) to have access to health and care data in a Trusted Research Environment?’
  • ‘How should the value of Discover-NOW’s health and care data for research be realised and distributed?’

During the deliberation workshops, expert presentations were used to ensure that members of the CAG were able to make informed contributions. Across these presentations key information was provided about data access and safeguarding, Discover-NOW’s upcoming Trusted Research Environment (TRE), investment and ongoing costs of running the Discover-NOW Hub as well as options around how any potential future surplus of money could be distributed.

John Norton, Citizen Partner of Discover-NOW, said:

“I firmly believe in health data being used responsibly for research into treating and preventing disease, but this is only possible if we have the support, confidence and trust of our communities. Through examples of involvement like Discover-NOW’s CAG we have clear recommendations and expectations from the public, only possible through engaging in meaningful and trustful ways.”

What did patients and the public tell us across the deliberations?

During the first two workshops on access to health and care data, participants in the CAG were positive about the potential for research to progress diagnosis, treatment, and cures, making links to the benefits of access to data during the COVID-19 pandemic.

Universities tended to be regarded as trusted to access data, however, there was concern around commercial and international companies, and the potential for data to be used in ways outside of research – for example to inform healthcare insurance.  Once the processes for considering access to data were explained, participants recognised the potential benefits of working with commercial partners on the condition that strict controls are implemented.

When asked about governance structures, the CAG was supportive of setting up an independent data access group to provide scrutiny and challenge to data access. It was felt this group should have a range of people including scientific expertise, researchers and patients and members of the public. The CAG also felt strongly that access to data should be only for approved researchers, should be time limited and be subject to strong legal implications and penalties should there be any misuse of the data.

They also felt that access requests needed to show a real gap that the research would fill to justify the need for the data, for example that it would lead to a new treatment or improved health outcomes.

Finally, when discussing how to allow access to data, participants talked through the trade-offs in allowing data to be shared directly with researchers, or only accessed in a secure environment e.g., a TRE, and allowing all or restricted sections of a dataset to be viewed. Participants recognised the risks involved but felt that letting the data leave the TRE was necessary for the greater good of the research, and that flexibility was needed in terms of how much of a dataset the researchers were allowed access to.

John Norton, Citizen Partner of Discover-NOW, said:

“It has been truly impressive to witness such a broad range of views from such a diverse group, really getting under the skin and grappling with these complex issues. It demonstrates the power and effectiveness of informed conversation to explore people’s expectations and to involve them in genuine decision-making.”

In the second two workshops on value realisation and distribution from Discover-NOW’s health and social care data, participants joined in with a discussion about the benefit of health and care data for research. Most participants’ first association was non-financial benefit, such as helping with decision-making and the accuracy of the data itself, and to many participants the financial value was simply for sustaining the Hub.

To explore further, participants then considered different ways in which a potential future surplus in money could be invested. The options included investing back to the Hub, investing into the NHS, investing into a research fund and paying patients and local community groups directly for use of their data. Opinions on these options were not aligned across all members of the CAG, however in deciding how any future surplus should be distributed, three clear and consistent underlying principles emerged:

  • Any future surplus should be allocated to the areas where there is potential for the greatest impact.
  • In deciding where any surplus should go based on this principle, there must be a robust and transparent process, which involves the right people as well as patients.
  • The driving factor in allocating future surplus should be the ability to address local issues.

Participant preferences also varied depending on the size of the surplus; most participants supported larger surpluses going into maintaining the Hub and back into the NHS, with smaller amounts being distributed to areas that need it most and where it would have the greatest impact on people. This might be through a research fund to tackle local issues, or through community groups, charities, or public health initiatives.

Following on from this, the CAG discussed different value exchange models that Discover-NOW could implement. Participants were really insightful in their comments across the range of complex options, and it was clear that with all options, many attendees felt there should be an upfront access fee for the data. Participants were clear that a tiered pricing model must remain to ensure that Discover-NOW does not exclude smaller organisations, and it was important to acknowledge that there is not a one size fits all and that Discover-NOW should utilise a range of value exchange models.

What was the impact of involving patients and the public?

The recommendations set out through public and patient involvement in these deliberations are already having a direct influence on Discover-NOW, as the Hub works to ensure it aligns to the expectations and recommendations set out.

This includes:

  • Taking steps to ensure that data access requests reflect what is important to the public
  • Reviewing the existing data access committee to ensure it is diverse and includes a range of people from scientific backgrounds as well as members of the public and patients
  • Steering the development of its new Trusted Research Environment (TRE) and how it can be linked safely with other datasets or TREs

John Norton, Citizen Partner of Discover-NOW, said:

“There is no doubt that the deliberations of the CAG are having a real impact in important areas of how the Hub is governed. I see this as an authentic example of how informed views of the wider public can influence, as they should, the ways in which their data is available for research.”

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