Collecting Your Personal Health Data – Should You Object?

There seems to be quite a furore developing over the plans by the NHS to make your personal medical data available for research to a wide range of organisations, including commercial companies. It is no doubt true that the NHS has an enormous amount of medical data on the UK population which is unrivalled anywhere else in the world except possibly in China.

That data which might be as simple as weight and blood pressure, through to blood tests and even DNA samples, could be exceedingly useful by using “big data” analysis techniques to identify possible causes of disease. It would of course include past diagnoses and treatments including medication.

But there have been a number of protests raised about the risk of loss of confidentiality and the fact that it might not be completely depersonalised (i.e. the data released might enable people to be identified). Even some of my neighbours on the App Nextdoor have been advising people to opt-out.

This is a complex area and I remember discussing it with my GP some years ago when it was first contemplated. He had concerns but I do not while I think such data could be enormously useful in diagnosis and the development of new treatments. The Investors Chronicle ran an informative article on the subject last week and covered some of the companies active in this area.

For example it mentioned Alphabet (parent of Google) partnering with hospital chain HCA Healthcare to develop algorithms using patient records. As I have recently been treated in an HCA facility (they own London Bridge Hospital) that might include me. The article pointed out that even your Apple Smartwatch will be recording some medical data such as heart rate exercise data.

A number of companies are developing partnerships with hospital groups to collect and analyse the data they have on patients. For example, AIM listed Sensyne Health (SENS) is doing so. They recently announced an agreement with the Colorado Center for Personalized Medicine which will extend their database by 7.3 million patients to over 18 million. They obviously plan to “monetise” that data by supplying it to other companies for research purposes. I do hold a few shares in Sensyne.

What are the concerns? Insurance companies would certainly like to know who might be bad risks by looking at patient data. They are unlikely to be able to do that, particularly as any data released will be depersonalised. But will it be impossible to identify people as some might enable linkages to be made? Perhaps not totally impossible but the risks seem low to me and personally I could not care less who knows my medical history. Others might disagree on that point but the benefits of having a good database of medical data to help with research, much of which is done by commercial companies, is surely invaluable.

There are opt-out provisions for those who have any concerns.

See https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research for more information.

Roger Lawson (Twitter: https://twitter.com/RogerWLawson  )

You can “follow” this blog by clicking on the bottom right in most browsers or by using the Contact page to send us a message requesting. You will then receive an email alerting you to new posts as they are added.

Leave a Reply