Dr John Havard: Shining a spotlight on the national care.data row
A GP’s diagnosis
The care.data scheme to extract GP held data nationally has been in the news a lot recently but what is the row all about? The Government’s reputation for handling confidential data is as secure as their grip on stolen civil servant laptops so we would seem to have every right to be concerned. The national publicity campaign has slipped under most people’s radar so there is a lot of justifiable concern and I hope I can shine a torch into the dark corner of care.data.whychangethings?
The overarching debate centres around the potential benefits for the whole population against the rights of the individual. There are examples in the past where the wider population benefit has trumped pockets of dissenters. Many objected to putting fluoride into the water (which was their democratic right) but these people tended to enjoy better dental care than those who derived real benefit from the intervention. Immunisation is another example where the benefits over-ride the risks but individuals have the right to opt out even though this makes disease eradication for the whole population less likely. But what are the benefits and risks of this data extraction and what information does the NHS want to extract about us?
The data that they plans to extract is family history, vaccinations, diagnoses, referrals, NHS prescriptions and values like height, weight and blood pressure. No real concerns here for me but they also will extract identifiable information i.e. NHS number, postcode, gender and date of birth. We are told that this is to match GP data with that from hospitals and other sources. They can only extract data that we GPs have coded so no free text observations can be seen. It is the Health and Social Care Information Centre that will hold the data and it will be their responsibility to anonymise it.
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The NHS is almost unique in that every citizen has their own cradle to grave record which is an immensely useful tool to researchers that really could help save lives.
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This data will be available for your local commissioners to use to help them make more accurate decisions based on real information from the local population. This is very persuasive to me but NHS England will later allow other organisations to access this data IF a scrutiny panel of experts feel it will improve patient care and be in the public interest. NHS England state these instances will be exceptional - and we have to take that on trust.
Patients will not be aware of the number of organisations that will have access to their personal data and might be concerned that hackers could also obtain that information. Although all this is possible we have to recognise that access to your weight and BP is somewhat different to your bank account password.
Nevertheless it does seem wrong to be extracting private information without explicit consent. GPs are worried about their obligations under the Data Protection Act and also concerned that anonymised data can be reconstructed using a ‘jig-saw’ attack which is an illegal process that combines with other datasets.
We also share the wider public concern that once you give the Government any data it seems only a matter of time before it is misused, lost or stolen. The most important concern here is that extracting personal data without consent risks patients losing trust in the confidential nature of the NHS. Care.data has now been stopped in its tracks pending further review and consultation and we must all be made more aware of the arguments before the autumn.