The NHS have recently announced that they are to introduce a replacement for the General Practice Extraction Service (GPES) which has been their method for collecting data for ten years now but is now deemed to be no longer fit for purpose.
NHS Digital plans to introduce a new system for collecting data called the General Practice Data for Planning and Research (GPDPR – not to be confused with GDPR), which will come into operation on 1st July 2021.
What Will This New Data Collection System Do?
The GPDPR will continue to allow the data from various patient records to be used to support health care, planning and come up with ways to improve patient care, just in a more modern way.
One of the main benefits of this new system is that it “reduces burden on GP practices, allowing doctors and other staff to focus on patient care,” according to NHS Digital.
The data collected by the GPDPR will be used in the following ways:
- To aid a number of research projects which will look at how healthcare in the NHS is run and how it could be improved
- To understand the long-term effects of COVID-19. So much time and effort has gone into firefighting coronavirus and creating a vaccine that as it stands experts don’t know enough about the virus and its long-term health impacts. So data collected over the following months and years will help provide a better picture.
- To carry out research into how people from different ethnic backgrounds access treatment in order to identify any inequalities, which can then be addressed.
- To carry out a wide range of research and development focused around cures for serious illnesses.
What Is Being Collected?
In a GDPR world it’s important that data isn’t misused as now everyone is more aware of their rights, so the NHS have specified the following with regards to what data will be collected and shared:
- GP Medical records e.g.
- Past diagnoses
- Test results
- Immunisations etc
- Gender information
- Sexual orientation
- Data about medical professionals who have treated that patient
This will all be done anonymously and “NHS Digital will not collect patients’ names or addresses. Any other data that could directly identify patients (such as NHS Number, date of birth, full postcode). This process is called pseudonymisation and means that patients will not be identified directly in the data. NHS Digital will be able to use the software to convert the unique codes back to data that could directly identify patients in certain circumstances, and where there is a valid legal reason.” (source: NHS Digital)
Sounds Good, Right?
On first look this all sounds like a good initiative as it makes it easier for medical professionals to access vast amounts of anonymous data which can be used to carry out valuable research and help improve treatment going forward.
But this new proposal has raised red flags amongst a range of critics.
Dr Neil Bhatia (GP and data autonomy advocate) told website pulsetoday.co.uk that the new GPDPR looks to be capturing excessive amounts of data compared to the old scheme and has been brought in so quickly GPs haven’t had enough time to tell patients. Dr Bhatia said, ‘Six weeks is not a long time for practices to put out the information and to make their patients aware that this is going to happen. We have 30,000 patients in my practice, but there are practices with 50,000 or 100,000 patients. How on earth are they going to reach patients in six weeks?’
On top of this, campaign group for digital rights, Foxglove have launched legal action against this move as they say it breaches current data protection laws. Rosa Curling, from Foxglove, said she had “serious concerns” with regards to the collection of sensitive patient data (e.g. sexual health, illness data etc) as it could be shared with tech firms in the US.
Another voice against the new scheme is MedConfidential who are ‘Campaigning for confidentiality and consent in health and social care.’ Speaking for MedConfedential, Phil Booth said that patient trust “needs to be preserved” and that the GPDPR could “potentially destroy” that trust.
Should We Be Concerned?
Hearing a reaction like this could make you worry that your data could potentially end up in the hands of companies outside of the EU and GDPR jurisdiction. However NHS Digital have responded to re-emphasise that all data will be anonymised before being sent to a third party and that “researchers wanting to access this data will need each request to be approved by the independent group advising on the release of data and a GP professional advisory group, with representatives from the British Medical Association and the Royal College of General Practitioners.”
Patients also have the right to opt out by informing their GP surgery of their wish to be removed from the scheme by the 23rd June 2021.
Find out more
What are your thoughts on the new General Practice Data for Planning and Research? Do you think it’s a good thing as it will benefit research and improvements within the NHS or do you worry it’s just another way to harvest data and sell it on? Let us know your thoughts.
We hope you have found this article of interest and if you’d like to read similar articles please bookmark our site as we will be bringing you regular insight articles on the world of MedTech.