Equitable returns for patients and taxpayers when public healthcare data are shared for commercial research
The threats to patient privacy from sharing data have been well publicised. By comparison, the risks of healthcare systems missing out on the gains generated from healthcare data have been largely overlooked. As well as potential benefits from improved treatment or diagnosis, research using patient data can bring financial rewards—for example, by selling artificial intelligence (AI) products the data are used to develop. The indicative market value of the data held by England’s NHS has been estimated at £5bn if it were to be sold for commercial purposes.1
For cash strapped healthcare systems, stewardship of vast reserves of data presents opportunities for innovative collaborations with industry. However, they are not well placed to ensure fair returns. Although ethics committees examine the privacy implications of research using patient data, they do not generally consider protecting the value of data; nor are such committees well equipped to do so. Mechanisms need to be instituted to share revenues and access to new technologies that arise from private sector collaborations.