The Citizens’ Summit was commissioned by London’s five health and care partnerships via the OneLondon Local Health and Care Record Exemplar (LHCRE) programme, which is supported by UCLPartners, as one of London’s three Academic Health Science Networks.
The OneLondon Citizens’ Summit was a large scale and in-depth public deliberation on uses of health and care data. It involved 100 Londoners in a four-day process of detailed discussion and debate. Participants reflected London’s diverse population, came from all 32 boroughs, and had a mix of attitudes towards data sharing. They were provided with technical information by experts and practitioners. The work was overseen by an independent advisory group.
Through public deliberation, London is leading the way in understanding how citizens weigh-up the benefits and potential concerns of data use, to reach an informed set of public expectations that will now shape the development of policy across the capital.
How do Londoners expect their health and care data to be used?
- Access and control in health and care data
At the end of the process, after four days of deliberation, there was almost unanimous agreement (97% of those who attended on the day)* that all health and care organisations in London should join up identifiable data to support the provision of care to individuals. An expectation was set that health and care professionals would only have access to information relevant to their roles through a means of role-based access control. Strict conditions were set out by Summit participants, taking into account the level of urgency of a patient’s condition, safeguarding of information and accountability.
- Use of de-personalised data for health and care planning and improvement
Participants recommended that de-personalised data must be used by relevant organisations to plan and improve services and demonstrably benefit the health of the population, with conditions set out to ensure security of data, transparency of access, and an individual’s choice to opt out of this use if they wish.
- Use of de-personalised data for research and development
Conditions for using de-personalised data to support research and development included who should have access (including commercial organisations) and how they should be charged for this access, with a tiered pricing model being suggested. Participants also set conditions around how information should be safeguarded and accessed in a safe and secure setting, and how benefits – financial and otherwise – should be realised and distributed across the NHS.
There was a strong expectation set that citizens are involved in ongoing policy and decision-making around the uses of health and care data as part of a continuing diverse citizens’ advisory group, with a request for those in elected positions, for example, the London Assembly, to play an oversight and scrutiny role.
- Consistency across London
After four days of deliberation, nearly all of the participants (98% of those who attended on the day)* stated an expectation that all health and care organisations in London must join up de-personalised information, as part of a population dataset, to support proactive care, planning, improvement, research and development in line with the recommendations and conditions they set out.
What does this mean for London’s health and care system?
Data collected about a person’s health and care offers a range of benefits – from helping NHS and care staff to provide safe, quality care, to planning and improving services, to supporting research and discovery of new treatments. The public health emergency of the Covid-19 pandemic has highlighted more than ever the need for a joined-up approach in using data, both now and into the future. This is an expectation shared by Londoners, and the recommendations formed by participants through the Citizens’ Summit provide a clear directive to the health and care system.
One participant involved in the Citizens’ Summit, said:
“I consider my healthcare information to be very personal and it’s important that it is discussed openly as to whether we want that to be shared, or the extent to which it’s shared. It’s very democratic to be part of this process. We can often feel, politically, quite impotent as individuals, so being able to feel like the opinions I’m expressing are going to be helping to shape policy… it’s really good to be a part of it.”
A second participant commented:
“Certain expectations that I had of the NHS and our data were completely blown out of the park. Connections I thought might be there – or hoped were there – weren’t. So it’s been very informative. I came in initially with the view that, ‘the data is mine, no one should have access to it’, so I’ve done a big flip. It’s been a journey because I’ve kept flipping to and fro.”
Speaking about the implications of the report recommendations on practice, Dr Charlie Davie, Director for DATA-CAN: The Health Data Research Hub for Cancer hosted at UCLPartners, said:
“Public trust and confidence in the way data is used for research is vital. Through DATA-CAN we are working with patients and the public to ensure health data is used transparently and responsibly for research.
“The recommendations laid out in this report are very important and will inform our practice going forward. As the report highlights, short-term, short-burst engagement such as the OneLondon Citizen’s Summit – which I was delighted to attend and learn from – need to be backed up by longer term work. This is something we hope to achieve through DATA-CAN’s Patient and Public Involvement and Engagement Learning programme.”
Prof David Lomas, Director for UCLPartners’ Academic Health Science Centre said:
“It’s good to see that Londoners at this summit strongly support using data for research, recognising the potential benefits this can bring to health and care. It’s important that safeguards are in place to ensure that data is used appropriately, protecting patients’ privacy. As our Academic Health Science Centre reviews our approach to working with data, we will consider the measures we need to take to ensure our working practices are in line with the expectations laid out by Londoners in this report.”
Recommendations and findings from the OneLondon Citizens’ Summit are detailed in a new report, Public deliberation in the use of health and care data.
For more information visit www.onelondon.online
*These figures are included as an illustration of the strength of opinion amongst OneLondon Citizens’ Summit participants and should not be extrapolated to the entire population of Londoners. These questions were posed to Summit participants on Day 4 following a significant period of information-giving and deliberation.