NHS Data Commercialisation seems to be on the agenda again. Sensyne has signed up at least six Trusts, and Google Deep Mind and Amazon are apparently making overtures, along with a raft of smaller niche companies. I am supporting an NHS organisation to think this through, to ensure that there are benefits for patients and the taxpayer and that they can stay on the moral high ground in the face of groups opposed to this.
As a teaching hospital Commercial Director, I had several approaches c10 years ago. Broadly the commercial partner would propose taking anonymised data (in these cases relating to relatively specialised conditions) from 10-20 global teaching hospitals. They would convert the data to a standardised format, which all participating hospitals could access for research, encouraging global collaboration. The data would be sold to pharma/ life sciences companies, with a very generous royalty to the participating hospitals. In 2010/11 it seemed like a no-brainer to me – improved NHS access to research data should improve outcomes, pharma companies would only buy data as part of developing new therapies which would also improve outcomes, and the NHS would receive additional funds for data it had anyway. Long and complex discussions with the ethics committee, board members, lawyers and patient groups eventually placed it firmly in the ‘too hard’ box – patients hadn’t consented for their data to be used in this way, even when anonymised.
National attempts through care.data ran into similar hurdles between 2013-15, and others bold enough to try it, including The Royal Free and Deep Mind, have faced well publicised challenges.
The Israeli health system, with 5 million patients on a single longitudinal record, combined with a thriving tech industry, seems to have produced a number of interesting companies which have applied machine learning and AI to their data. Is it time for the UK government to say that the quid pro quo for a free NHS is that the NHS gets to use your anonymised data for any reasonable purpose?
Until that time, how should Trusts navigate the complex issues around this? From the sample which I have already spoken to, there seem to be some common themes. Firstly, focus on the benefits in terms of improved outcomes to patients. Secondly, and as with any change programme, identify stakeholders and engage with them early. Thirdly, and following on from this, ensure that clear governance is in place around what data will be available to whom and for what purpose. Fourth, good legal advice and contracts which reflect the principles and allow the Trust the right to audit how data is being used. Finally, the money – ensure that the NHS is rewarded fairly.