care(free).data

I opted out of the HSCIC care.data project not because of a reluctance to share my health records for medical research rather I was concerned at the way that care.data was rolled out with little or no explanation of the privacy risks or where my data might end up. And let’s face it, this government hasn’t got a particularly good record when it comes to transparency or promises made regarding the NHS.

Everyone I’ve spoken to about the care.data project has agreed with the underlying principle and my experience of attending health related events suggests that most people are enthusiastic about participating in health based research. So how have we reached the stage where the care.data project is in danger of permanently damaging health based research in this country?

The rollout of care.data has attracted criticism from the start. Information leaflets delivered amongst bundles of junk mail, many people yet to receive a copy of the leaflet, thinly veiled threats to GPs for opting out all of their patients because of privacy fears. Underlying all of this has been my concern that my data would end up in the hands of commercial interests. A number of high profile people within the health and research industries have tried to play down these fears arguing that we freely share information via social media and that our supermarkets track our purchase history. Frankly, I don’t give a damn who knows what brand of soap powder I use but I object strongly to having my health records passed around willy nilly. But apparently I shouldn’t concern myself with those sorts of issues because everything will be hunky dory.

 

Which brings us to Monday of this week when the story broke of 14 years worth of HES (Hospital Episode Statistics) being sold/given away to an umbrella organisation for insurance companies which had used the data to raise premiums. Perhaps I’m becoming paranoid but it doesn’t take too much imagination to see that data, however anonymised, being linked to other data bases which would allow the insurance company to increase revenue. Imagine a patient who, like me, has a genetic disorder. By linking that data to, let’s say, the electoral roll they could discover that the patient has children; would it surprise anyone were the insurance company to raise the cost of premiums for those children without a diagnosis? What if there are errors contained within our health records and we’re penalised financially or denied access to drugs or treatment as a result? We can’t easily access our own health record to ensure the information contained therein is correct.

Later on Monday evening the HSCIC released a statement saying it wasn’t their fault that the data was sold/given away and blamed it on a previous incarnation of the HSCIC. More worryingly, they were unable to immediately identify where else the HES data had been sold. And of course, once the data is out there who knows where it will end up?

The sad thing about this whole sorry saga is that because of the chaos and mistrust created by the shambolic rollout of care.data it will be us, the patients of this country, who will potentially lose out as people become increasingly reluctant to share their health records thereby denying research organisations access to an extremely valuable, nay essential, resource. This government and those charged with rolling out care.data need to act now to repair the damage. Inform people of the risks, be completely transparent, allow patients to opt out of sharing their data with commercial interests and then and only then will I consider opting in.

 

Profile photo of Rob Finnigan

I’m an ADPKD patient who was lucky enough to have a transplant in 2003 after only eleven months of dialysis. I'm the north-west Patient Advocacy & Support Officer for the BKPA and my interests, other than my role within GMKIN, include sport, music and politics . Follow me on Twitter: @finnigr

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