Our Health Data Stories
This report written with Connected By Data, aims to bring out the personal stories of a range of patients as they encounter, think about, and respond to health data collection and use, to ground understanding and action in lived experience and help deliver person-centred care. It exposes how patients think about data on a day-to-day basis, and how this affects their approach to their health data and the way they use health services. And it recommends further work around data opt-outs, data service procurement, community engagement, and digital health apps.
We surveyed over 64,000 Just Treatment supporters and had 2,752 responses. We also selected 16 people for further interview to deepen our understanding. Here we have summarised key themes from both the interviews and the broader survey results.
The patients we spoke to have a growing fear, confusion, mistrust and misconceptions about how their data is handled – a far cry from the “no surprises” principle. Patients and staff are extremely concerned about potential mis-uses of NHS health records, including the sharing or selling of data with companies such as insurers. These fears are intensified by media coverage of data breaches and data uses in other contexts, for example around access to abortions in the US, and by the government's much-criticised handling of proposed changes to health data in the past, such as the GPDPR programme. Several patients told us they believe that even if their health data is not being shared or sold now, it may be in the future.
This report is published as news breaks that the Federated Data Platform contract has been awarded to Palantir. The patients we spoke to are deeply unhappy with the prospect of their health data being handled by a large US company which has failed to dispel fears about the NHS selling patient data. For some, this concern is centred on Palantir’s founder and owner, Peter Thiel, who has been openly critical of the NHS. For others, it arises from a broad perception of Palantir as an unethical company.
More generally, the patients we spoke to are worried about the provision of services by private companies. They are concerned this represents creeping privatisation with companies compromising their data privacy and making undue profits from the public purse and based on public data.
Even if the fears around health data aren’t certain to happen, the existence of these concerns alone has tangible effects on how people interact with healthcare services. Patients and healthcare professionals we spoke to say those fears may lead patients to avoid accessing health services or sharing sensitive information with doctors, delaying diagnosis and treatment.
Further, patients are already opting out of health data uses they support in principle, such as medical research or public health planning, because they believe opting out will stop their data being processed by Palantir. YouGov polling for Foxglove has suggested 48% of the public would opt out of data sharing should the Federated Data Platform be introduced and run by a private company. This will undermine the utility of the datasets we need for medical research and NHS planning.
Dismissing and ignoring the realities of public concerns about health data not only runs counter to the commitment to build public trust in the Data saves lives health data strategy, but risks damaging both patient health and the ability to use health data for NHS planning and medical research.
We recommend four concrete steps to address public concerns about the collection, use and sharing of health data:
Co-design a replacement for the National Data Opt-Out to provide a more granular level of control that better matches patient intuitions in both effect and default behaviour.
Revise the procurement process for health data services to strengthen public accountability and legitimacy, embed ethical due diligence on suppliers, and factor in reputational and practical risks in bid assessment processes.
Give local communities a powerful say over the adoption of the Federated Data Platform by NHS Trusts and Integrated Care Systems, to earn a social licence to operate at a local and regional level.
Tighten controls on the recommendation of health apps to ensure patients are not recommended to use apps that compromise their data.
Only a radical resetting of public and private sector approaches to the governance of health data will give patients the confidence that their rights, interests and choices are respected. Without this, public trust in the use of health data is in danger of collapse with disastrous impacts on the NHS in the future.