Your article (‘Our health data is about to flow more freely, like it or not’: big tech’s plans for the NHS, 14 September) on the dangers of big tech involvement in the management and regulation of NHS patient data rightly identifies trust as the key element in ensuring that patients continue to permit their data to be shared for beneficial treatment and research purposes.
Our research explores the reasons why so many people opted out of sharing their data after the government announced its General Practice Data for Planning and Research (GPDPR) programme in 2021. People told us they recognise the value their data has to research into new treatments, and would like to make it available for this use. However, they object to the way the GPDPR proposals would not have allowed patients to decide whether or not their data should be shared, with whom and for what purpose.
Government proposals to regulate access to health data fail to recognise people’s personal connection to “their data”, including anonymised data. People feel they should have a right to make decisions about its use which reflect their identity and values. NHS data is part of the story of our lives and our interactions with healthcare professionals. The desire to contribute to health research and support the NHS means that people are willing to share this part of who they are, but this community spirit can be severely undermined by a lack of trust that their data will be handled in line with their wishes.
In order to benefit from health data’s value as a societal research resource, regulatory approaches need to address the lack of trust with transparency, ongoing patient control, and an understanding of what patients mean when they say their health records contain “my data”.
Dr Catherine Bowden and Prof Sarah Devaney
Centre for Social Ethics and Policy, University of Manchester