Re: Patient access to full general practice health records
“Please Give Us Our Data – Now Not Later” – Patients Ask For Full Access
Patients registered with GPs can access directly some of the information held about us in our GP surgery databases through Apps supplied by GP surgery and more recently the NHS’s own App.
Much of the early development of Apps brought collaboration between patients and GPs, exploiting innovation to give us access to information that helps us better manage our own health, particularly those of us with long-term conditions or multi-morbidities, navigating complex care pathways and multiple appointments in multiple locations.
The 2019/20 GP contract required practices to offer citizens digital access to all their prospective data. However compliance has been slow, delayed by the demands of dealing with the pandemic.
As a further step towards helping patients see, understand, and manage our own healthcare data, on 1 November 2022 all patients in England were to be given access to their newly created data in their electronic GP record – the Citizens Access programme. The key addition in this programme was to give access to coded data (e.g. test results), written notes, letters and other communications about them for newly-created records.
So it was frustrating for many patients – and for our carers and families too - to hear that the BMA and many GPs had pushed for a further delay in the implementation.
Although questions about potential harm have been highlighted in the debate, points about potential and actual benefits to patients are given less prominence, especially by those representing GPs. Furthermore, the potential harms of not allowing access have only rarely been highlighted, for example patients not having ready access to their data when travelling. The views of pro-access patients are seldom heard, even though such access is evidently the intended way forward for our NHS and for our future health care.
Patients have been waiting since 2019 for full access, and to some of us this latest delay appears less about day-by-day changes and more about a collective reluctance to move forward and address the imbalance between patients and clinicians about us being able to see our own data.
Feedback from the early adopter GP surgeries is that releasing new written information did not see an increase in surgery workload. Some even said it had reduced their overall workload, for example because of fewer enquiries from patients seeking test results. The NHS has published the encouraging lessons learnt from early adopter GP practices..
We asked some of our fellow members at use MY data for their views on why the Citizens Access programme is so important to us all. A typical response was:
“I have chronic conditions that need ongoing monitoring. Having access to my records means that I can access my blood tests and vaccination records without bothering my GP or practice manager and when I have to travel to see a consultant in a hospital in another county - who often can't see my test results - I can share them with him using the NHS app. And when something isn’t correct in my record, then I can ask for it to be corrected. So it improves accuracy and it makes my life easier and those providing my care’s life easier. I wouldn’t be without it.”
Further delays in allowing us to access our own data will continue to constrain the ability of patients and GPs alike to manage health issues and to reduce strain on busy surgeries and limited resources. The evidence suggests that the Citizens Access programme can be and has been delivered, and so we ask all involved to move to full and nationwide implementation as soon as possible in 2023.
 NHS Digital website, https://digital.nhs.uk/services/nhs-app/nhs-app-guidance-for-gp-practice...
 BMA press release; https://www.bma.org.uk/bma-media-centre/urgent-clarity-needed-on-constan...
 NHSE web page, https://digital.nhs.uk/services/nhs-app/nhs-app-guidance-for-gp-practice...
Competing interests: No competing interests