Did you miss my blog yesterday?
I was digesting the news of David Cameron’s plans to allow our anonymous health records to be used by the medical research community. Having access to these data will enable them to study causes, patterns, treatments and side effects in disease that will help save lives.
In some cases researchers may need to access data that will identify us, like our postcodes or age profiles – but they cannot do that without our permission and if we want to deny them access, as the old song goes, we can Just say no.
Understandably, patient groups are concerned about the potential threat to their privacy but, for once, I agree with the PM who made it clear that “this does not threaten privacy, it doesn’t mean anyone can look at your health records, but it does mean using anonymous data to make new medical breakthroughs. ……The end result will be that every willing patient is a research patient and evey time you use the NHS you are playing a part in the fight against disease, at home and around the world”.
Of course, the media has focused on our fears, lightly skating over researchers’ reassurances that robust safeguards are in place to prevent misuse or loss of data. After all, it gives us another chance to have a go at the NHS.
The real story is that not enough has been done to explain what happens when our data are used. GPs are ‘too busy’, ‘would have to be paid’, ‘have enough to do already’*, and the media would rather focus on fears rather than benefits.
For the last two years I have been working with the UK Clinical Research Collaboration (UKCRC) to find the best ways to tell patients about how data are used, and protected, in making a vital contribution to medical research. The market research I commissioned and the copy I wrote has resulted in an information leaflet which went into doctors’ surgeries in England, Scotland and Wales on 21 November 2011 - telling it like it is.
We researched our approach through consulting with patients and GPs, and working with experts in the medical research field. Explaining the complexities of a layered process, and facing people’s fears head-on isn’t easy – but it’s essential if people are going to make choices.
Perhaps in the Government’s brave new world, where we’re all research patients, part of a Big Society and all making our contribution to the economy by giving up the things we’ve come to expect, we can add another item to the check list – telling the people the whole story – not just the media spin.
*source: UKCRC focus groups with GPs 2011
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