My week has been dominated by Care.Data. The exam question: how to rescue the NHS’s (so-far) ill-fated programme to link up patient data from hospitals with patient data from GP-held records? I have had discussions, phone calls and Twitter exchanges. I have reviewed the Health Select Committee hearings. I have been invited to high level meetings.
Out of all this emerges an outline agenda for getting it right. I am eager to share this with you now. It is not final National Voices policy, but it is a first stab and I hope that our members and friends will hone and enrich it.
First things first. The policy intent behind Care.Data is right. Linking data about patients enriches our understanding of health, illness, treatment and services. It supports medical research and improvements in care. It already happens, but the Care.Data programme would extend its scope significantly in the UK (though not especially so by international standards).
The Care.Data train crash is bad for patients and public health. It undermines trust in the power of data to be a force for good. It could set back the causes of medical research, health services improvement and integrated care.
Most patients and citizens support the idea that information about them can be used for purposes other than their immediate care. Many are positively keen for this to happen for the public good. But we care about who sees the data, and for what purposes, and we want our privacy protected.
The attempted launch of Care.Data by NHS England and the Health and Social Care Information Centre (HSCIC) has gone off the rails and the decision to pause is the right one. The reasons for the derailment are manifold. I will highlight three.
First, the programme was launched before the rules had been written. There is therefore a complete absence of clarity about what happens to data, how it is governed and policed and who might eventually see it.
Second, there has been a failure of engagement with the GP community, such that a substantial part, if not majority, now seem opposed. Most egregiously from my point of view, there has been a woeful absence of engagement with patients, citizens and civil society organisations. We could have helped prevent the train crash, if given the chance. So much for “putting patients first”.
OK, enough recriminations. What now needs to happen? I would like National Voices to be among the most prominent supporters of Care.Data. We can’t do that now. What would it take?
Here is my twelve point plan.
- Write the rules of engagement. What happens to the data, who sees it, for what purpose? Who is not allowed to see it? What are the sanctions for breaking the rules? How is privacy and security protected? It’s a nonsense that this hasn’t been done. Do it now.
- Write the rules collaboratively with patients, health charities, civil society organisations, GPs and all others with a stake. Work through all the tricky issues and be prepared to change the policy along the way
- Take as long as necessary. The timescale for launching Care.Data was entirely artificial, as is the six month “pause”. More haste, less speed.
- Outlaw access to data for non-health related purposes, like insurance.
- Be clear about penalties for breaking the rules and make them sufficiently punitive.
- Ensure that in the revamped Care.Data there is complete transparency about the handling of all data about patients.
- Stick with the opt out approach: it is better than opt in. The consequence of opting in to the linking of one’s anonymised data is that that the pool of people sharing their data is much smaller and far less likely to contain those with the worst health problems. Opt in would be bad for health inequalities.
- Make it really easy to opt out.
- Co-design with all interested parties a proper public information campaign. Not some silly leaflet popped through the letter box with the pizza fliers. You need to explain the process, set out the benefits and be honest about the risks (which cannot be reduced to zero). The messages need to be tailored to the needs of different groups. Proper information is the quid pro quo of an opt-out system. The implied consent of those who do not opt out must be informed. Those who do opt out must be able to do so knowing why.
- Establish a robust oversight process, to police the extraction and use of linked data. Ensure it is independent of government, NHS England and the HSCIC, and chaired by an unimpeachable public servant.
- Consider whether the process needs additional statutory underpinning.
- And finally, Care.Data is now a busted brand. For God’s sake call it something else.