This week most of us are receiving a leaflet from the government entitled “Better Information means better care”. This tells us the objective is:
…to improve the quality of care and health services for all. By using information about the care you have received, those involved in providing care and health services can see how well they are doing, and where improvements need to be made.
On the face of it, this all sounds very benign, but also admitting that they would also provide the data to “approved researchers and organisations outside the NHS”. In The Guardian last Friday, a Dr John Parkinson wrote an article saying how vital this was for improving healthcare. In it he says:
However, it is important that people do not opt out. To reach all our goals of successfully fighting disease and preventing illness we really need everyone to share their medical records and every GP to allow their practice to join the system. By doing this, people could potentially be saving someone’s life or helping to find a new treatment for a rare disease
Dr Parkinson does have a vested interest here – he is Director of the Clinical Practice Research Datalink, an NHS-funded organisation that works to maximise the use of anonymised NHS clinical records for medical research. However, he is at least honest enough to also draw attention to the downside of this, with the counter argument:
Media stories such as the Guardian’s “NHS patient data to be made available for sale to drug and insurance firms” on Monday reinforce people’s concerns and confusion about why their personal information is being extracted.
So, in the article he references it picks up on a familiar Guardian theme of personal data privacy to reveal that:
…privacy experts warn there will be no way for the public to work out who has their medical records or to what use their data will be put. The extracted information will contain NHS numbers, date of birth, postcode, ethnicity and gender.
The leaflet through our doors is therefore somewhat disingenuous in that with your postcode, date of birth and NHS number, and the kind of “Big Data” Warehouses that large companies use nowadays, they will have no trouble matching this data up with other sources to provide a 99.9% certain identification of each individual.
So, we can be fairly certain that pretty soon people will be receiving sales literature targeted at their medical conditions from drug companies, and an even more invidious risk that insurance companies may start refusing life, motoring, travel and other cover on the basis of what they have discovered about you. For example, could someone who is tagged, perhaps mistakenly, as an alcoholic ever get motor insurance?
This all brings us back to the very basic concept of “who owns your medical data”. The NHS and government clearly believe they do, and that it is theirs to give away (and even sell) to others. The libertarian will believe that the data belongs to each individual, and that they should take ownership of their medical record. With modern technology, the latter approach is entirely feasible, we could each have a smart card containing our whole medical record which we would choose to reveal to different healthcare providers – GPs, hospitals, dentists, chiropractors and even homeopaths if we were that way inclined. We would be able to browse our own records for ourselves – it would be OUR data.
Of course, the NHS and government have three fundamental problems with this “patient owns it” approach.
- For a start, every healthcare provider you have ever seen keeps their own record of you. There was an IT project to assemble a central record of each project, but this failed after £10Bn was spent as reported here. So, how are they able, so soon after that failure, to assemble a complete healthcare record? Its accuracy must be in doubt.
- Secondly, if they believe they own the data, they can sell it and make money. If you own it, they can’t do that.
- Finally, from the experiences of someone who has worked inside a hospital and seen patient medical records, doctors sometimes write rather personal comments about the nature of the patient, for instance: “An awkward so-and-so who is a cantankerous pain in the *ss”
It is for each person to decide whether to allow them to distribute your medical record, or rather to tell them not to. So, be warned, if you don’t want it sold to commercial companies who might use it against you, get in touch with your GP now.