The seven Health Data Research Hubs have got off to an excellent start with exciting, ambitious work plans. Their next task is to develop business plans, including fee structures and charging regimes, to ensure their sustainability now and into the future after central funding has ceased. How should they go about this, ensuring transparency and public trust are at the forefront?
This challenging question was the subject of a one-day workshop on January 22 hosted by the Academy of Medical Sciences in partnership with Health Data Research UK and the Collaboration for the Advancement of Sustainable Medical Innovation (CASMI). A recent study calculated that NHS data could generate around £10bn per year from operational savings, improved patient outcomes and economic benefits, underscoring the importance of the issue.
Attendees and live-stream participants were treated to talks from luminaries such as Lord Darzi, Prof Sir John Tooke, Baroness Dido Harding, Prof Bryan Williams, Prof Andrew Morris and others. All acknowledged that valuable NHS data cannot simply be given away for free, and that any charging system must be transparent and fair, with the aim of building and maintaining public trust.
We debated principles and methods for determining fees for access to datasets curated by the Health Data Research Hubs. A proposed framework consisting of a) fees for processing, cleaning, anonymising and linking the data, b) a share of cost savings or product discounts that might arise from use of the data, and c) profit sharing revenue streams or royalties generated from products developed by those using the data, was broadly welcomed, with some suggested modifications.
However, this is a highly sensitive area. Hardly a week goes by without a media report of concerns about data privacy and commercial access. Explaining what the Hubs are doing and why, and seeking patient and public support for their work will be crucial. This means being very clear about the public benefit that should flow from the curated datasets and the security measures in place to protect personal privacy.
All seven Hubs have developed public engagement and involvement strategies. Securing public involvement in the development of their charging policies and fees, and communicating the rationale for these, should now go to the top of their agendas.