Comment: So what next for care.data?

The fundamental issue at stake here is respect for the citizen.

The last month of debate about care.data feels like the previous ten years of discussion about the sharing of personal data bottled as a concentrate solution of ill-temper or should that be distemper?

Many will say that NHS England – who yesterday announced a six-month pause in the scheme – have taken the biggest hit. But no one emerges with great credit from this affair. For citizens are non the wiser one way or the other. They have been ill-served by policy-makers on both sides of the debate, as they have been on this issue for as long as I can remember.

I should say that I support care.data.

I think that it will be a secure system but that there are always risks. And no guarantees. I buy into the notion that it is important to future medical research. But I think the claims around this are often exaggerated and don’t do their proponents any favours. I think a form of ‘opt-out’ is the most practical option and in keeping with the values that most of us hope underpin the NHS. Yet I also think that we should have the right to change our minds if and when our life circumstances change.

I think the professions have played fast and loose on the issue for too long. After all, a lot of their power within the system is locked into the current status of yours and my medical records and data.
When we developed the ‘Your health records saves lives’ leaflet many moons ago, citizens were more willing to share their data than GPs who tended to take up a highly paternalistic stance. However, more than a few were less and less paternalistic about their patients when it came to the prospect of working with pharmaceutical companies and being rewarded for it.

Anyway, that’s an aside or should I say unwarranted broadside. But I am afraid that care.data and the years of debate about data preceding has often been a case of policy-makers being, at best, neurotic and, at worst, mistrustful of their fellow citizens.

Fact is that I have been able to form an opinion because I have had an opportunity to listen to, and interrogate, the arguments at close quarters. And that is what was so wrong about the care.data leaflet campaign. In tone and style and delivery it was dismissive of the citizen and their right to question and form an opinion. Would it have been different if NHS Citizen had been in place I ask? Could it not be the perfect issue on which to test and perfect this initiative? Or is that too much to expect?

As an example of how ‘national’ and ‘local’ can work together in the new NHS to roll-out national initiatives, care.data has been a disaster. Whatever happens over the next six months, the initiative must be co-produced with citizens at source, and its delivery collaborative effort by NHS England working with Healthwatch, patient groups, GP Participation Groups and many other partners. If care.data means that much to our nation in terms of health and wealth, we should spend the time and money in investing in our citizens to understand why.

And, lastly, if researchers and doctors and managers want a lifetime of yours and my data to work on then they need to do more to develop a relationship with citizens about its importance and how we can be better custodians of it. A few weeks ago a head of an NIHR Biomedical Research Centre was telling me how their NHS Trust is now including short statements in letters to patients to help grow understanding about how data is used. It is a small example of the level of visibility we need for this important aspect of delivering care in the future.

Fact is, if we want a 21st Century NHS, we need a 21st Century attitude to involving citizens in decision-making.

Cancer patients seeking information about their condition want to know about clinical trials, study shows.

This is a fascination study published by the open access journal ecancermedicalscience.  I think it was actually published in November but only came to my attention via Twitter yesterday.

It looks at the needs of cancer patients and organisations across Europe when it comes to online information.  The results are based on a pan-European survey and questionnaire plus literature.  The authors make a number of recommendations that they say should be incorporated into ecancerHub – the online portal established by a number of cancer organisations and with European Commission backing to help patients find the information they need.

What struck me looking at the responses to the question ‘I want information on…,’ is the number of people who said they wanted information about clinical trials – over 70% as far as I can tell from Figure 2.  It’s this sort of evidence that supports the case for making information about research and trials much more ‘front-of-house’ by all providers, whether they be charities, clinicians or NHS organisations.  It’s the sort of evidence that supports efforts now underway in the Uk to make that happen including ‘Your medical records saves lives.’

You might also want to read the paper in conjuction with this report of a first-person account given by patient advocate, Jan Geissler, at a conference about online information held last year.   I rather liked the conclusion in the report that:

‘As somebody aptly put it at Doctors 2.0, e-Health should not stand only for electronic health, but should stand for “empowering health”, i.e. empowering the patient through social media and the co-production of knowledge online.’

As an aside, those of you following the medical records issue might be interested in this blog on Which?Conversation from before Christmas.

Here’s hoping this works.  So, (sorry John Humphries et al) rather than send you all off somewhere else, here is the pdf of the whole patient information leaflet ‘Your health records saves lives’ which I wrote about yesterday.  Click here: PHR LIFT England online

As I say, please pass it on…for me.

And you can also see the UKCRC news release here:  PA_Final_21_11_2011

Available in all good GP surgeries – new patient information leaflet on the use of patient data for research

This leaflet ‘Your health records saves lives’ (click on the picture below) marks the fruits of much hard work by the UK Clinical Research Collaboration (UKCRC) partnership over two years.

Conceived, designed and written with patients very much as partners in the process, it seeks to explain how patient data is used for research purposes.

From Monday 21 November it will be available in 6000+ GP surgeries in England as well as Scotland, Wales and Northern Ireland filling a huge void in what patients can get from their primary care providers on this topic. We’ll be evaliasing it over the winter and hopefully will have a case therafter to scale it up in terms of availability.

You can view a copy on the NHS Choices website and please forward it far and wide. I imagine the other UKCRC partners will carry it on their websites in due course too.

Note the NIHR involvement. When the Academy of Medical Sciences published their report on research regulation (‘A new pathway to etc etc…’) earlier this year, they urged NIHR to support work such as this which would raise public awareness of the importance to health research of patient data and the willingness of patients to participate and become involved. So, they have made a small but significant step towards meeting this call by supporting this leaflet.