The delay to the NHS data grab provides more time to find out what it really means for patients

Now that the date for extracting patients’ data from primary care has been postponed, the government should use this time to to enable meaningful patient consent to be obtained, say Rosie Shire and Ellen Welch

On 12 May, NHS Digital released plans to extract pseudonymised data from the GP records of every patient in England into a central database, so that it could be used for research and planning. The scheme had been in development for three years, but patients were given just over a month to be firstly made aware of the project, and then to opt out if they wished to do so.

The Doctors’ Association UK (DAUK), in partnership with others, were led by non-profit tech justice organisation Foxglove to challenge both the Department of Health and Social Care and NHS Digital to halt this process, to enable meaningful patient consent to be obtained. The government responded to this pressure by delaying the opt-out deadline until September, giving us more time to find out about the General Practice Data for Planning and Research (GPDPR) initiative and how it will work.

As clinicians, we have seen firsthand the benefits of sharing health data during the covid-19 pandemic, and DAUK is not against the idea of using GP records to aid research, planning, and funding decisions. We are, however, concerned at the way the government is trying to push through this new data sharing process without fully informing patients. Sneaking this through with so little fanfare or discussion raises suspicions that there is something about GPDPR that the government is trying to hide. 

The reality is that most people would be happy for the NHS to have their health data, but the current information available on the process does not make clear who will have further access, why they will be given further access, and what will happen if access to the data is breached? If a third party or commercial company financially benefits from having had access to this wealth of health data, will the NHS be able to share in that benefit?

We have many questions and few answers so far.

Why is the system for GPDPR an opt-out process? If “opt out” is the default position, can the government be sure that everyone who has been opted in gave their full, informed consent? After all, to consent to something is to “give permission for something to happen”—it is active, not passive. In medical school we are also taught that to consent to something involves having the capacity to understand the risks and benefits, and to be able to weigh these up and freely make a decision (without duress). For those patients who lack mental capacity, who will decide whether their records should be shared?

We are also troubled by the fact that the processing of these opt-out forms is being forced onto general practice without agreement or remuneration at this time of unprecedented patient need. The process of putting the form on a patient’s record and ensuring the opt out code is added will need administrative time, which may mean one less person answering the telephones or requesting prescriptions. There is already an online option available for patients to opt out of sharing their hospital data (the national data opt-out); so why hasn’t the government used a similar digital solution for primary care to remove some of the burden from general practice?

Of course, online only is not enough; we know many people do not use the internet, so information needs to be made available in a variety of formats to avoid discrimination. Yet this important work shouldn’t be once again dumped on GP teams—it should be a properly planned and funded campaign.

It is vital that all these questions are answered before people make a decision about whether to opt in or out of this scheme. Usually, everything a clinician documents in medical records will be confidential, only for use for the patient’s care, and with strict limitations about when confidentiality can be broken. If a doctor feels they must break confidentiality, for the benefit of the patient or the public, they are advised to try and obtain the patient’s consent before doing so. The GPDPR risks disrupting this protected relationship that is at the heart of primary care. If patients are concerned that something they say during a consultation could be shared beyond their medical records, will they be as open and honest with their GP? This whole process could have huge longer term implications for patient care if GPDPR deters full disclosure and professionals are advising treatment without an awareness of the whole picture. 

We now have until September to seek answers. If the fine print reveals that people’s data will not be protected, then we will continue to take the issue to court to fight for patients’ trust.

Rosie Shire is a GP with the Doctors’ Association UK. Twitter @relshire

Competing interests: none declared.

Ellen Welch is a GP with the Doctors’ Association UK. Twitter @wanderingwelch

Competing interests: none declared.