Making NHS data work for everyone

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This report looks at the access and use of NHS data by private sector companies for research or product and service development purposes.

What’s the “value exchange”?

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. It provides the skills and know-how to develop data-driven tools which can be used to improve patient care. However, this is not a one-sided exchange as the NHS makes the data available to build these tools and offers medical expertise to make sense of the data. This is known as the “value exchange”.

Our research uncovered that there is a lack of clarity over what a fair value exchange looks like. This lack of clarity in conjunction with the lack of national guidance on the types of partnerships that could be developed has led to a patchwork on the ground.

Why does it matter?

Knowing what the “value exchange” is between patients, the NHS and industry allows for a more informed conversation about what constitutes a fair partnership when there is access to data to create a product or service. A national strategy matters because it ensures that local bodies are not creating perverse incentives in the system. For example, a hospital could receive a financial revenue from a partnership it has engaged in because of the way it was structured. This might be fair at a local level, but this increases the risk of some Trusts becoming richer than others.

What needs to change?

Engage with the public

Engaging with the public about how data about them is being used within the NHS is crucial. Various models have been developed to do so. There are, however, no public-sector models or examples that allow patients to participate in the conversation about what fair value exchange with the private sector might be. The report recommends that this should change, and people should be given an opportunity to engage in these conversations.

A national strategy

The Department of Health and Social Care needs to create a national strategy, which provides a framework for the array of possible models that will not have an adverse effect at the national level. This paper presents the first table of the various other commercial models that could be explored.

Access to good quality data

The paper suggests that transparency over data quality could be increased. It also suggests a way in which access to data could be sped up without compromising individuals’ privacy.

Commercial and legal skills

The report recommends that the Department of Health and Social Care should invest in creating a new independent unit with legal and business experts to help NHS organisations negotiate fair and proportionate partnerships.