Londoners have their say on how their health data is used

Londoners have given national and local health leaders a mandate for how they expect their data to be used as part of a region-wide discussion.

The OneLondon Citizens’ Summit was a large scale and in-depth public deliberation on the uses of health and care data.

It involved 100 Londoners in a four-day process of detailed discussion and debate, with technical information provided by experts and practitioners.

Participants were recruited to be reflective of London’s diverse population, recruited from across all 32 boroughs, and with a mix of attitudes towards data sharing.

Key themes that emerged included a strong endorsement for joining-up health and care data to support individual care as well as proactive care, service planning and research, as long as certain conditions are in place. A full list of their conditions can be seen below.

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How do Londoners expect their health and care data to be used?

1. Access and control in health and care data

There was almost unanimous agreement (97%) 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.

2. 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.

3. 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.

4. Governance and oversight

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.

5. Consistency across London

After four days of deliberation, nearly all of the participants (98%) 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.

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In receiving the detailed recommendations, national and local leaders confirmed that these public expectations will be used to shape policy for the region.

London’s chief digital officer, Theo Blackwell, said: “There is huge potential to harness health and care data in a safe and secure way, in order to improve Londoners’ wellbeing while protecting their privacy.

“The Mayor and I are clear that Londoners must be at the heart of shaping how their data is used and by whom. The OneLondon Citizens’ Summit has empowered Londoners to make recommendations on this important issue, to ensure the system can develop policy in a trustworthy way.”

The summit was commissioned by London’s five health and care partnerships via the OneLondon Local Health and Care Record Exemplar (LHCRE) programme, and delivered by Ipsos MORI and The King’s Fund, supported by Professor Graham Smith from the University of Westminster.

Recommendations and findings from the OneLondon Citizens’ Summit have been published as part of a new report.