Hilary Benn - Member of Parliament for Leeds Central
Lots of constituents contacted me about the sharing of medical data.
The Government had made an announcement about this but following concerns expressed about the lack of public awareness, including about the ability to opt out, it was announced that the process would be delayed for two months until 1st September.
This explains how to opt out.
The NHS has put out the following statement which explains what the purpose of sharing the anonymised data is.
General Practice Data for Planning and Research (GPDPR) – NHS Digital
The key section is as follows:
“ Patient data collected from general practice is needed to support a wide variety of research and analysis to help run and improve health and care services. Whilst the data collected in other care settings such as hospitals is valuable in understanding and improving specific services, it is the patient data in general practice that helps us to understand whether the health and care system as a whole is working for patients.
In addition to replacing what GPES already does, the General Practice Data for Planning and Research service will also help to support the planning and commissioning of health and care services, the development of health and care policy, public health monitoring and interventions (including coronavirus (COVID-19) and enable many different areas of research, for example:
1. Research the long-term impact of coronavirus on the population
There is a lot about coronavirus that we do not know, including the long-term health impacts. Patient data from GP medical records will be very important in the coming months and years, as scientists analyse and understand the impact of the virus on human health.
2. Analyse healthcare inequalities
For example, to understand how people of different ethnicities access healthcare and how the outcomes of particular groups compare to the rest of the population. This will help the NHS to assess healthcare inequalities and make any necessary changes to its services.
3. Research and develop cures for serious illnesses
For example, patient data is being used by the University of Oxford RECOVERY trial, which has found ways to improve the treatment for people with coronavirus.
Researchers have also previously used patient data from GP medical records to show that there was no association between the measles, mumps and rubella vaccine and the development of autism; to confirm the safety of the meningococcal group B vaccine; and to investigate whether certain medications increase the risk of cancer.”
As this data belongs to us, and only to us as patients, it is absolutely vital that everyone knows about this plan and is given the opportunity to opt out from having their data shared, if that is what they wish.
Speaking personally, I have no problem at all with my medical data being shared for the purposes of research, the treatment of disease and the development of new drugs provided that it is properly anonymised and there is no possibility whatsoever of an individual being identified. This is a very important condition and the NHS needs to demonstrate how it will be secured.
I hope this is helpful.
Hilary Benn MP