care.data – Intro. A mother’s journey in Oz.

Mother’s Day seemed as good a day as any, to reflect how I safeguard my children in future, in a cloud-based digital world and currently, on care.data. Ever since I first read last summer about the initiative to be implemented by the Health and Social Care Centre, I have followed as in depth, as much as time has permitted. I began the journey, as an NHS patient who believed my health records were used by my GP at my GP practice. In 2010 I had opted out of the Summary Care Record. I usually read forms to the end and tick the boxes or not, to keep my data confidential.

Along the way, I have been surprised to learn our hospital records were used for anything other than our care and its delivery. I’ve been shocked to see how it has been widely distributed to third parties, in various formats. I’ve come to understand how our health data entered at a whole range of different entry points (Prescription Service, Choose and Book, Mental health and more), end up stored in linkable silos under the umbrella of one organisation. And I’ve learned that the more I know, the more patients like me, should know. So, feeling that this is missing in the current online debate, I’ve decided to share my point-of-view and learnings, from a patient’s point-of-view.

David Aaronovitch’s Times’ opinion article on March 27th stated data privacy fears have made health-data sharing “toxic” and that campaigners are nothing but a ‘man with a megaphone’, like the Wizard of Oz. Whilst he is correct that there is a vocal minority, I believe it is simply because the majority are not able to take the time or had the interest to get to grips with the subject in depth. I have, albeit as an ordinary lay person on the outside.

There has been little opportunity for discussion of our ordinary patient opinion. Yet it is all of our records, ordinary patients, parents and children, which are being handled as a commodity beyond our direct care, without past knowledge or consent. I think a lot about it, and have broken this into parts. Part one: Transparency, Part two: Communications and Choice. Part three looks at the simplest concrete risks the Times article believed, “have made for public disquiet, but when you examine them they behave like candyfloss”.

I’ve followed it for almost eight months now. Its highs and lows still need a brain, heart and courage. By standing up, I risk being labelled ‘selfish’, a consent fetishist, or scaremongering. I don’t believe it is any of those to seek facts, education and engagement.

So here’s my #caredata story so far.

Thinking to some purpose