A national strategy to harness the value of healthcare data

Interest has been gathering around the potential commercial value of data held by NHS organisations. The topic first appeared in the Life Sciences Industrial Strategy, which mentioned that a framework should be established to make sure that the UK captures the value in algorithms generated using data held by the NHS. This topic was later picked up in the House of Lords report on AI in the UK, which dedicated a section of the report to the value of healthcare data.

Since then, steps have been taken to give more guidance to suppliers of data driven technologies with the publication of a voluntary Code of conduct, by the Department of Health and Social Care. Eventually, the code will also provide information on the types of commercial models that could be explored by technology companies and healthcare providers.

Although, it is very welcome, Reform’s research argues that alone the Code of conduct is not enough as it is not mandatory. The DHSC needs to go further and provide leadership via a national strategy which seeks to ensure that the value of data held by the NHS is truly optimised.

The private sector is an important partner to the NHS and plays a crucial role in the development of healthcare technologies that use data collected by hospitals or GP practices. These technologies can be applied to many areas of healthcare such as improving scheduling of operating theatres or diagnostic tools.

When building a data driven service or product, the private sector generally provides the skills and know how to develop these tools. However, it is not a one sided exchange. Patients and the NHS make the data available and NHS doctors can offer medical expertise to make sense of the messy data it holds.

There is no national level registry of data sharing agreements and no description of existing commercial arrangements

Currently, one of the difficulties faced by stakeholders is that they do not always know how to value the different elements of this exchange. The salaries paid for skills and expertise can be used as a way of measuring their value.

However, there is no method for valuing data or clear ways of understanding the value of an innovation before it has been trialled and eventually launched. This makes it very difficult to have a conversation about what a fair partnership looks like.

Data sharing agreements

Despite these difficulties, partnerships have been developing. Reform’s research has uncovered that it is difficult to decipher what has actually been happening on the ground. There is no national level registry of data sharing agreements and no description of existing commercial arrangements.

This means that there is currently no way of truly understanding what the national picture is. Reform’s research reveals that there is a patchwork of partnerships and presents the first list of existing partnerships. It recommends that NHS England and NHS Digital should create a register of data sharing agreements between the NHS and commercial organisations.

Reform argues that the DHSC should invest in creating a new independent unit with legal and business experts to help NHS organisations negotiate fair and proportionate partnerships

The report warns that if a national strategy is not developed there is a risk that, taken together, these partnerships might not lead to the best outcomes for the NHS as a whole. For example, it is currently possible for a hospital to receive a financial revenue from a partnership it has engaged in because of the way it was structured.

This might seem fair at a local level and rightfully so. However, this increases the risk of some trusts becoming richer than others if no central mechanisms are put in place to counteract these affects.

Complaints have already been voiced about some partnerships diverting funds from one GP practice to another, leaving some practices to only care for individuals suffering from chronic health conditions.

A national strategy is crucial to ensure that local NHS bodies are not creating perverse incentives in the system.

A macroeconomic study assessing the impact that different partnership models might have is needed to avoid reinforcing a postcode lottery or other negative externalities, such as exclusive data access. This should form the basis of a national strategy.

NHS organisations do not currently have the legal and business expertise to be able to appropriately negotiate these partnerships with private sector companies. Having an even distribution of commercial and legal skills at trust level would be unfeasible as these skills are a scarce resource within the public sector.

Reform argues that the DHSC should invest in creating a new independent unit with legal and business experts to help NHS organisations negotiate fair and proportionate partnerships.

Data collected and held by NHS organisations has huge value for direct patient care – which is its main purpose – but also for research or product and service development purposes.

The DHSC needs to create a national strategy to make sure that the value of data is optimised primarily for the benefit of patients, but also for the NHS and the private sector.