Keeping your medical data private
There are questions about about how private health data should be used.
Data held in GP medical records will soon be collected by a new service called General Practice Data for Planning and Research data collection. From July onwards data that is currently siloed at your GP will be taken by NHS Digital and centralised.
This includes records about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls, appointments, mental health, STDs, gender, ethnicity and sexual orientation.
On the face of things it makes a lot of sense to move health data into a central store.
It enables all services you use to access the same information. Anyone with any experience of the NHS will know the frustration of having to repeat case history again and again as you navigate services which are in no way joined up.
It allows analysis of a massive data set which may uncover trends and links that would not otherwise be spotted. Even tiny changes in public health can make a massive difference: font design, when spread over millions of leaflets and millions of people, can literally save lives. So machine learning on big data of millions of health records…?
The problem is this. The easier data is to use, the easier it is to use. Are you confident there will not be data breaches? Are you confident data will not be sold to private companies? Are you confident you will not receive marketing based on your health history? Are you confident the success of employment, insurance or credit applications will not be influenced by your health? If not now, in the future? Is this a price worth paying for any public health benefits? Is this something we trust this government not to sell? Or the next government? Or the one after?
Here’s what NHS Digital has to say: “NHS Digital does not sell data. It does however charge those who want to access its data for the costs of making the data available to them…We do not make profits from the service. The data will only be used for health and care planning and research purposes by organisations who have a legal basis and legitimate need to use the data…We do not allow data to be used solely for commercial purposes”.
Am I being overly cynical when I worry that they say ‘will not’ rather than ‘can not’?
Am I being overly cynical if I read them as saying they will allow data to be used for commercial purposes so long as there’s also some health and care planning or research purpose?
This should be bigger news. There should be more public debate. Unless you do something it’s happening to your data.
See Medconfidential, the advocacy group, for more information to help you with your decision. And remember doing nothing is a decision.
I scooped the FT, who I’m glad to say are covering this on the front page now.