NHS organisations offered ‘rewards’ for trading our health data with private companies

It’s not widely known but NHS organisations such as GP practices and Trusts are being pushed to set up Data Sharing Partnerships (DSPs) to ‘realise the benefits of the data assets they hold’ and trade our health data with third parties in return for ‘rewards’. These third parties include private companies, such as those involved in the pharma, digital, diagnostics, and biotech industries.

The outcome of such ‘partnerships’ – the assets created from our data – may be sold in national or international markets.

This push for data sharing comes in the context of government policy that calls for the NHS to move to a system of ’data access as default‘ for secondary uses of our personal information (i.e. uses beyond our direct care). Alongside this, the Government’s Life Sciences Industrial Strategy (seen as providing ‘an exceptionally attractive agenda for global companies’) claims that allowing industry access to NHS data will lead to the development of new knowledge and products, and ultimately economic growth.

Negotiations for DSPs are supported by a business unit within NHS England (NHSE), the Centre for Improving Data Collaboration, which provides commercial and legal advice on things like contract negotiations and forms of reimbursement.  It has no regulatory or approval role but aims to create ‘an enabling environment’ for DSPs.

A webinar introducing the Centre carefully avoids any mention of selling data (which could be illegal). Nonetheless, it clearly refers to the importance of financial return for NHS organisations not just to cover the cost of extracting data, but ‘where desired, to create revenue’. Suggested reimbursements include free or discounted products arising from data access; royalty shares; or Intellectual Property ownership in a new product. Any benefits, such as they are, are likely to be restricted to the individual NHS organisation within the partnership, so these piecemeal deals will further fragment our health service as a national system.

In order to simplify and accelerate negotiations between NHS and external partners, the Centre has published a Values Sharing Framework that sets out the principles that should underpin those agreements where the outcomes might be commercialised. However, these principles, along with the Centre’s webinar, suggest that the Centre’s stance is to favour the private sector. For example, it calls for ‘deals’ to be negotiated at speed, with the NHS focusing on providing data ‘that meets user needs, rather than seeking value shares that stifle innovation’. And it wants commercial companies, despite their potential to profit financially, to be charged no more for data than charities or academic partners concerned with public benefit.

Studies show that the majority of the public is averse to the use of their NHS data by private companies. The risk, should they know of these data sharing partnerships, is that public trust will be undermined and increasing numbers of people will want to ‘opt out’ of data sharing. This would have serious implications for the usefulness of the NHS data pool, eg patient benefits from research.

It’s shocking that the public are largely unaware that, without consultation or consent, their personal health data is being traded with commercial companies, as default, in the Government’s thirst for growth.

For details of how to take action about these ‘partnerships’, see the Health Data webpage. This provides a briefing that you can send to MPs, trades unions, LA Health Scrutiny committees, and/or Integrated Care Boards, and a template covering letter that you can adapt.