Earlier this month, the government delayed plans to consolidate patient data from GP medical records in England and make it available to third parties including academic and commercial organisations. The IT arm of NHS England, NHS Digital, still intends to take these plans forward to help improve health and care – however, the data-sharing scheme has now been postponed to September. Previously, patients were given just one month to opt-out of data-sharing but this has now been pushed back as a result of pressure from the public and professional bodies.
While the aims are laudable, as better data can help the NHS deliver better care and spur research, the method of launching and communicating the so-called General Practice Data for Planning and Research (GPDPR) scheme has been widely criticised. Most of the critiques boil down to a lack of transparency and public consultation which has resulted in trust concerns.
Dig a little deeper and you’ll discover a myriad of other critiques. Worryingly, one of these is around how easily recognisable patients can be even after the process of ‘pseudnoymising’ – where data is cleared of certain factors such as a patient’s name and date of birth but not of other details which could lead to an individual being identified, such as their doctor’s name. Campaigners have argued that this poses a risk, especially to young female researchers whose colleagues could use this to dig through their entire medical history.
The shared purpose of both technology and healthcare is to put humans at the centre of care and innovation. Health data is possibly the most sensitive data, being highly personal and emotive, so therefore requires the most robust and protective approach. The simple fact that this is now referred to as a ‘data grab’ shows how far away this is from a people-centred approach.
At stake is the development of lifesaving technologies, better health equity and more involvement in healthcare and community as communities are asked to participate in programmes that contribute to the greater good. The roll-out of the vaccine programme has shown first-hand how data can be used to drive impactful decision making, but this cannot come at the expense of vulnerable people, women’s safety or via a lazy assumption that people are happy to have their health data shared. We have the opportunity to be a truly future-facing country by informing everyone of the power of their data, ensuring they know how to exercise choice and empowering them to make a difference.
Not only is the UK sitting on a treasure trove of medical data, but we also have a plethora of pro-technology ethics advocates – from the Oxford Internet Institute to the Ada Lovelace Foundation to notable individuals such as Rachel Coldicutt and Tabitha Goldstaub. Data alone won’t solve all our problems. Developing interactive ways to communicate and take everyone with us as tech and health changes will.