Making better use of NHS data is an urgent priority for Britain: done right, it can improve outcomes for patients, reduce cost for the NHS, and deliver huge benefits for the UK life sciences sector. Patients are underserved every day because the NHS fails to share information in ways the public expect.
Mistrust is one major obstacle that stands in the way of progress. A series of missteps, data breaches, and scandals have damaged public confidence and set back the mission to use NHS data better. Today, over 3.3 million people in England—one in every twenty patients—have opted out of sharing their health data because they do not trust government to use it in ways they allow.
There is a wide consensus that this can and must change. For the first time in almost twenty years, a new government has a chance to restore trust.
We represent a cross-section of patients, legal groups, and citizens who have successfully opposed prior NHS data schemes, including 2021’s General Practice Data for Planning and Research. But we have come together to light a different path for a new government in the hopes a fresh consensus might avoid the mistakes of the past.
Just before the election, we also held a broad-tent discussion seeking common ground on these issues; many participants have endorsed further dialogue aimed at building consensus.
We all want the government to succeed in building a better system of NHS data sharing. This can only be led by Ministers – leaving it to central NHS bureaucrats will not build public trust. A new NHS data policy should give patients more control of their health record and build the trustworthy infrastructure and research the NHS needs.
In the spirit of change, we have agreed principles which we invite the new government to reflect upon. They are intended to guide a new mission to restore trust in the use of NHS data – to care for patients, to plan NHS services, and to spur science – in a way that keeps the confidence of doctors and patients.
All of us are ready to support this way forward.
Public & Patient Involvement: learn from the past
1. Launch a major national conversation on the better use of NHS data. We invite Ministers to launch a consultation on amending the NHS Constitution to set out how NHS bodies will deal with patient data. Only commitments in the NHS Constitution will rebuild public trust. This must be broader than any previous patient engagement we have seen or now being managed by NHS England. It should be honest about the trade-offs in the use of NHS data in science and designed so the whole British public can see it, understand it, and shape it.
2. In developing data use policies, NHS England must ensure meaningful public and patient involvement. Patients and their views matter, although it appears that some NHS managers only pay lip service to taking full account of patient views. Patients can be vocal and passionate about how their data is used. These views have not informed national policy; failing to address those views has undermined public trust and led to collapse of previous schemes. Patients and doctors will trust engagement that leads to change, not box-ticking.
3. Require NHS England to speak to doctors, patients, and the public before developing proposals for Ministers for NHS data sharing. NHS England’s current practice of working in secret (or with a tightly chosen cadre of supportive groups) and announcing programmes at the last minute must end. Excluding ‘data skeptics’ and the doctors’ union has failed to produce good results on national initiatives in the past. NHS England should be made to keep a regular, open dialogue with all stakeholders on its data plans.
4. Make it clear that the public will be involved in decision-making about access to NHS data for purposes other than the provision of care or beyond the NHS. Expanding the public conversation about the value the public want to see the NHS get from their health data is the only way to resolve debates about data sale. The NHS and public can receive more benefit from this data, but only after the public have said what public benefit is and once they can see how it has been applied. This should work with the National Data Guardian guidance on public benefit: but a broader conversation is necessary to deliver assent for change in data use. The public should answer questions about fair economic value for the NHS, such as reduced-price access to any drugs developed with NHS data, a share of the IP, or a profit share. They should define red lines for access to data (such as marketing and insurance), and protections in contract for the NHS, like march-in rights.
Boost life sciences in ways the public will trust
5. Promote trusted research tools for patient data. Systems, such as Oxford’s openSafely, have earned public trust and the support of the profession. Some exemplar regional SDEs (eg, Greater Yorkshire) have developed patient engagement programmes that are well trusted by the communities they serve. These successes should be funded, expanded and standardised. Researchers should be supported to use them.
6. Help ensure that all access to data for research will stay private with access granted via secure environments. A recent Lancet study showed that 78% of requesters to NHS Digital’s internal secure environment (and 89% of companies) asked for data to be transferred out of the NHS Digital SDE. The public are more likely to allow research if they trust that it will stay in secure data environments which publish all access requests and do not permit data sharing in bulk.
Build back trust with transparency and patient control, to encourage patients to opt back in
7. Repair trust by giving patients more choice and control. The government should develop a new, more specific opt-out that gives patients increased control of how their data is used beyond their care. This should let patients choose by use or user, or between planning and research. Where an opt-out has been offered, it should be respected. Data controllers should be able to access patient choice in a single place to ensure they are complying.
8. Build a tool that lets patients see their health record, where it has gone, who has accessed it, and why. This should be visible in a single website and on the NHS App. The current system of access to GP records should be maintained to include patients, particularly older people, without smartphones or reliable internet access.
9. Ensure that patient data is used to improve services, not target people for enforcement. Concerns about government misuse of NHS data by the police, DWP or immigration has driven some patients to opt out. The new Constitution should set out that NHS patient data will not be used without consent to assess, approve or deny a government benefit, to enforce immigration policy, or to affect a person’s rights or freedoms.
Openness and governance: a better, stronger framework for managing NHS data
10. Re-establish a body separate from NHS England to supervise the use of health data for NHS or other government purposes. This authority, which could be modelled on the former NHS Digital but with greater remit, should map and publish flows of data for internal purposes, or requests by other public bodies to access NHS data. It should have the power to shut down flows which are unsafe or no longer needed, to put data in safe environments, and to punish deliberate or reckless misuse. Accountability should go beyond fines to access bans for people who deliberately break the rules.
11. Establish a standardised NHS research board to supervise and give the public more transparency over safe, trustworthy research. While the HRA’s Confidentiality Advisory Group has done good work, governance of research access to NHS data is still a hugely complicated patchwork that ordinary citizens cannot hope to understand. Greater transparency and consistency are needed. A supervisory board could be formed of independently appointed trustees representing doctors, the National Data Guardian, civil society, academics, the public with support from an independent legal advisor and an audit staff. They should collate and publish all research requests, local to national, in a way that is simple and clear.
12. Ensure that systems exist to enforce NHS rules on data sharing. All data sharing practices should comply with the Caldicott Principles. However, there is, in practice, currently limited accountability for data breaches. That lack of accountability undermines trust and must be repaired.
13. Encourage responsible primary care data sharing by protecting family doctors. The individual liability of GPs for data sharing breaches inhibits legitimate data sharing by GP practices. GP practices should be indemnified for unintentional breaches of data sharing rules as they are for clinical negligence.
Back to basics: update NHS IT infrastructure and data skills for a 21st century health service
14. Focus investments in NHS data systems on the basics, and build up internal NHS data science skills. Listen to what doctors and hospitals say they need, such as computer improvements and communications systems. Avoid locking the NHS into monopoly data infrastructures. Prioritise these needs, instead of putting expensive dashboards hospitals didn’t ask for atop aging infrastructure. Hire in more data science skills, rather than relying heavily on consultancies.
15. Review the new federated data platform contract. There is a serious issue as to whether this contract delivers value for money, is fit for purpose, or can integrate with the NHS. If it fails a careful review, cancel the contract and repurpose the funds. If it is kept, reduce the contract’s risk by limiting it strictly to its current scope, with no extensions to research or other uses. Amend the contract to make the supplier deliver IT basics hospitals will need to successfully link data.
16. Within a national framework, allow regional diversity. Encourage innovation by letting the best local systems experiment and share progress, rather than dictating all outcomes from London.
We recognise that the new government will have multiple challenges and multiple and conflicting priorities. However, sorting out the current mess and lack of trust over NHS data sharing stands in the way of making progress in so many areas for the NHS. We hope that the consensus work which has led to approach set out above would provide a roadmap to the rapid creation of a new model that will allow progress in areas where previous governments have not succeeded.
The organisations and individuals set out below agree on the principles set out above – and are committed to working on the details to make a new programme a success.
Signed:
Foxglove
National Pensioners Convention
Just Treatment
Doctors’ Association UK
Download the briefing