Martin Marshall: Data sharing must be based on trust

NHS Digital’s General Practice Data for Planning and Research (GPDPR) programme has received a great deal of attention and caused significant controversy over the past few weeks. After calling for a robust public information campaign for some time, last Friday (4 June 2021), the Royal College of General Practitioners wrote to Matt Hancock, Secretary of State for Health and Social Care, calling for an immediate delay to the programme to allow for more time for patients to be informed. So, we were pleased on Tuesday (8 June 2021) when it was announced that the programme would be delayed for two months to allow for appropriate communications to patients, clinicians, and health charities.

Most people don’t need persuading of the benefits of sharing health data. Beyond the obvious benefit to clinical care, sharing healthcare data allows the NHS to plan to ensure sufficient services are commissioned to meet local and national need. It helps researchers to understand serious illnesses and develop cures. And during the covid-19 pandemic, data has been essential to everything from creating the shielded patients list, stopping hospitals being overwhelmed, to the hugely successful vaccination programme in which GPs have led the way.

GP data have a particularly essential role to play in improving public health as they contain a huge amount of detail, often gathered over a long period. However, the very thing that makes GP data so useful for healthcare planning and research, is also the reason that GPs have always been protective of our patients’ data: it is detailed and sensitive and collected in the environment of a trusting relationship between the patient and their GP.

GPDPR will see a central collection of GP data, to be held and managed by NHS Digital, the tech arm of the NHS. The data will be pseudonymised before they leave GP practices and requests to access them will then be overseen by a central panel, including GP representatives. This is in many ways an improvement to the existing situation in which individual GPs receive many different data requests and must determine themselves what is appropriate to share. The College has worked to see improved safeguards throughout NHS Digital’s planning of the collection, and we continue to press NHS Digital to ensure that their trusted research environment is fit for purpose and data are not disseminated outside of this.

Understandably, important questions are being posed about the possible dangers of data being reidentified, about what data might be shared with which organisations, and how this is done. It is not fair to characterise GPDPR as a “data grab” motivated by profit as some commentators have suggested – NHS Digital has been clear that data will not be sold, though processing costs will be recouped from third parties. But we can’t expect patients or healthcare professionals to accept blithe reassurances lacking in detail. The NHS and government bodies need to be held to account now and in the future for their actions.

The biggest immediate problem is that NHS Digital have failed to sufficiently communicate to clinicians and patients about the GPDPR programme. This has meant that few, if any, of the important messages about the benefits of data sharing are being heard and neither has there been an opportunity to explore properly and publicly the questions and concerns about the programme. Some people seem fearful of honest conversations with the public about the benefits and risks of sharing data; they should not be.

GPs are under enormous pressure at the moment, managing extreme workload and demand alongside their leading role in the covid-19 vaccination programme, with over 75% of vaccinations delivered in primary care. We cannot be expected to be responsible for informing patients about a programme that we legally have no choice but to comply with. Neither do all of us have the expertise to confidently answer questions about technical aspects of the programme.

Data sharing must be based on trust, so over the next two months we want to see a comprehensive campaign, led by NHS Digital, and accessible to all members of the public, which should include every patient being communicated with (not just ’told about’) individually. All of us as patients have a right to understand how our data might be used and to make an informed choice about what happens to it. The mechanisms by which patients can opt out must also be explained simply and clearly. This is an opportunity to articulate the benefits and risks of data sharing which, if done right, could improve public understanding and trust as well as public health.

Martin Marshall, GP, professor, and chair of Council at Royal College of General Practitioners.

Competing interests: none declared.

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