Value Sharing Framework for NHS data partnerships

Introduction

This framework introduces the Value Sharing Framework, a set of guiding principles to help NHS organisations negotiate fair terms for NHS data partnerships.

These partnerships allow NHS organisations to collaborate with partners from academia or industry to use health and care data for research, development and innovation. They deliver major benefits for patient care and the UK economy, and it is critical that the agreements that underpin them are consistent, fair and robust.

This framework sets out the principles NHS organisations and their partners should follow The NHS Centre for Improving Data Collaborations (CIDC) has also created a separate Guide to effective NHS data partnerships, which provides more detailed support.

Background and scope

Research by the National Data Guardian shows that the public understands the value of using data to improve patient care through research and development.

However, there are concerns about the security of sensitive data when the NHS partners with external organisations in the use of data. The public wants the NHS to ensure that fair terms are agreed for the use of public resources in data partnerships, including a fair share of any profits that are generated from partnerships that are commercialised.

Policy in this fast-developing area aims to realise the potential public benefits of NHS data partnerships in full and address public concerns about them. In July 2019, the Department of Health and Social Care (DHSC) published a set of guiding principles for data partnerships. Principle 2 says: “NHS organisations entering into arrangements involving their data, individually or as a consortium, should ensure they agree fair terms for their organisation and for the NHS as a whole.”

Until now, individual NHS organisations applied this general principle to their data partnerships in different ways. This has led to a degree of variation in the terms that NHS organisations have sought, which in some cases has delayed or deterred data partnerships of significant potential benefit to patient health.

The NHS secure data environment (SDE) network is taking shape across England. SDEs are data storage and access platforms that uphold the highest standards of privacy and security in the use of NHS health and social care data for research and development. When the network is complete, it will give researchers access to rich linked data at significant scale and will become the default way for researchers to access NHS data for research and development.

The Value Sharing Framework has been designed to complement the move toward SDEs. The framework will accelerate the negotiation of fair terms for data partnerships with the potential to improve patient care and deliver other public benefits. Applying it to new data partnerships at as we adopt SDEs will rapidly expand the scale and scope of NHS data partnerships and the benefits they deliver to patients.

Purpose and principles

Negotiating a fair share for the NHS of any value arising from a data partnership can be challenging. Setting a specific monetary value for data is complex and depends on numerous factors, such as the use case, the type of data being asked for, who else is asking for the data, the work needed to collect and curate the data, and the ability of organisations to pay. There is no single solution to evaluating the worth of data. These challenges can lead to protracted negotiations that delay or block valuable innovation. In some cases, there is a risk of entering partnerships on terms that are not fair.

The Value Sharing Framework is a set of principles designed to simplify and accelerate negotiations between the NHS and external organisations for data partnerships. The objective of these principles is to promote innovation by aligning incentives and simplifying processes. They are based on extensive engagement by the CIDC with data partners and the public.

While the principles of the framework will remain constant, the details of the value-sharing arrangements they shape will evolve over time. They will reflect improvements in data, the expansion of the SDE Network and changes in the numbers of users of NHS data and their needs. These principles will be mandated in certain national investment areas, such as the national SDE and sub-national SDEs. They are strongly recommended for use in all NHS bilateral partnerships.

Expected changes in the implementation of NHS data partnerships

The expansion of the NHS Research SDE network and the introduction of the Value Sharing Framework will require changes to the way NHS organisations participate in data partnerships for research and development. The Department of Health and Social Care's Data Access Policy will work with the NHS as it moves to a system of ’data access as default‘ for secondary uses of NHS data, facilitated by the implementation of SDEs. Data Access Policy will not change existing rules regarding data controllers, processors and accessors. However, it will change the mechanisms of how NHS data is accessed for secondary use. The Value Sharing Framework will work alongside the developing Data Access Policy in this area.

There are no defined timescales for implementing the commercial principles to new data partnerships, but we would encourage the system to begin implementation promptly, in keeping with public views.  NHS organisations may wish to begin by reviewing their approach to data partnerships and whether they are approaching partnerships proactively, reactively or avoiding them.  We have produced a data asset management strategy template to help NHS organisations work through the steps of strategy development, including clarifying the type of data partnerships, if any, that will be considered. NHS organisations can edit the template or incorporate it as a section in their wider commercial strategy. Please email us to request the latest version of this template.

It is important that high quality and high impact research continues while the transition from data sharing to data access is delivered. Current routes for using data will remain until there is sufficient capability and capacity in place within the NHS Research SDE Network to provide high quality data access, as outlined in the recent Data Policy Update.

Further resources

The Centre for Improving Data Collaborations (CIDC) has created a Guide to effective NHS data partnerships that provides more detailed advice for NHS organisations when they negotiate the financial terms of data partnerships with external partners.

The NHS Transformation Directorate will publish updated guidance on managing NHS intellectual property, including intellectual property that has been contributed to or created by data partnerships.

Appendix 1: The public benefits of data partnerships

Data partners contribute different resources to a data partnership. NHS partners generally contribute data, clinical and operational expertise, and, sometimes, access to public funding. External partners may contribute expertise in curating data for research and analysis, data analysis, finance, product development and marketing.

Combining these resources in data partnerships for research, development and innovation gives data partnerships the potential to provide significant public benefits. These fall into three main categories:

Health benefits

Patients, the population and public health systems can all benefit from data partnerships. Outputs from these partnerships can improve the quality of care, enhance patient engagement and participation, and support the development of new treatments and therapies. They can also help to improve the detection, prevention, and management of diseases, including chronic conditions and infectious diseases. These benefits include:

a) Better outcomes and care for individual patients

• faster, more accurate diagnoses from new digital diagnostic tools
• new treatments
• more staff time made available by new decision support and operational management tools

b) Better population health

• tailoring of available products and treatments to specific UK population health needs
• more detailed understanding of the diseases and trends affecting population health and wellbeing
• improvements in public health systems supported by continuous analysis of system data at scale

Social benefits

Data partnerships can support public health initiatives, facilitate research collaborations, and improve patient outcomes and safety. They can also help to address health disparities and support the development of personalised medicine.

Economic benefits

Data partnerships can allow the development of new products and services, support innovation, and create new business models. They can also help to reduce healthcare costs and improve efficiency, which can benefit both healthcare providers and patients. These benefits include:

• higher UK GDP from external investment in research and development attracted by the UK’s reputation for leading in life sciences and other research
• local economies strengthened by external investment and the creation of new skilled jobs
• extra money for the NHS that is reinvested in improving health and care services for patients

Further information on the value of data can be found in the Open Data Institute’s report on ‘Understanding the social and economic value of sharing data’. The report explores the challenges organisations face when estimating and realising the value of data and looks at mechanisms and incentives for data sharing.

The National Data Guardian has recently published guidance to support organisations in evaluating public benefit when they are planning to use, or allow access to, data collected during the delivery of care for planning, research and innovation purposes.

Appendix 2: Policy relevant to data partnerships and the Value Sharing Framework

Principles for dealing with resources in public sector organisations in the UK are set out in HM Treasury’s ‘Managing public money’ publication, which was updated in May 2023. The Value Sharing Framework builds upon the basic principles and standard practice set out in chapter 6 of that publication.

Existing commitments affecting NHS data partnerships are set out in the Data saves lives strategy (June 2022) and Department of Health and Social Care’s 5 principles to help the NHS realise benefits for patients and the public in data partnerships (2019).

The Data Saves Lives strategy states that “The future of the NHS depends on improving how we use data for 4 related purposes” including “using data for the research and innovation that will power new medical treatments”. The strategy sets out plans to harness the potential of data in health and care in England, while maintaining the highest standards of privacy and ethics.

The DHSC’s 5 principles stipulate what NHS data sharing partnerships must do to realise their potential benefits for patients and the public:

1. Use of NHS data must have an explicit aim to improve patient health and care or the operation of the NHS.
2. Fair terms should be agreed for the NHS.
3. NHS organisations should not enter exclusive arrangements.
4. Arrangements should be transparent and clearly communicated.
5. Arrangements should adhere to all applicable legal, regulatory, privacy and security obligations.

Appendix 3: Methodology and engagement

Developing the Value Sharing Framework

The Value Sharing Framework was developed between 2020 and2023, building on the experience and knowledge gained by the NHS Centre for Improving Data Collaboration (CIDC). CIDC advisors spoke to NHS innovation, technology and data leads. The centre also studied and advised on existing data partnerships with academics, private companies and the third sector.

The CIDC studied international examples of best practice in data partnerships to find best practice and the most appropriate approach for the NHS. Results from this research were fed into a first draft of the Value Sharing Framework for testing.

Clarification: Patient data

It is worth clarifying that information about patients is not sold. Access to patient data is given to approved partner organisations under a partnership agreement, which ensures that the NHS gets fair terms on behalf of the public to benefit the health and care of people in England. Any use of NHS data, including operational data, not available in the public domain must have an explicit aim to improve the health, welfare and/or care of patients in the NHS, or the operation of the NHS.

Testing the commercial principles

In late 2022, NHS England began testing the principles with a range of stakeholders, including members of the public, NHS data controllers and organisations seeking to access NHS data.

a) Patient and public involvement and engagement

After a competitive tender process, NHS England appointed Britain Thinks to run engagement activities with the public about the commercial principles. 2,000 people completed an online survey and 3 deliberative workshops were organised.

The introduction of commercial principles for access to NHS data was seen as a step forward, with a majority of participants strongly agreeing that NHS data has great potential to support innovation, bring benefits to patients and bring income to the NHS.

In the quantitative survey, 7 in 10 people thought the principles were clear. A similar proportion thought the commercial principles were acceptable.

About 70% of participants felt it was appropriate for the NHS to recoup the costs of data access, with 7% feeling it was not appropriate. Qualitative feedback indicated that participants felt that charging for access based on commercial and non-commercial uses was acceptable, and having different prices for commercial and non-commercial use was right and fair.

Participants agreed that the NHS needs to increase its income, but they wanted to avoid high costs being prohibitively expensive for individuals or small organisations who were not selling their outputs. Some participants felt that higher charges would not significantly impact commercial organisations with the potential to make large profits from selling the outputs and that they therefore could be charged a higher fee.

70% of participants thought it was appropriate for the NHS to share in the value of revenue generated from products or innovation that used NHS data. Qualitatively, most people supported the NHS taking a value share of revenue, though struggled to articulate why they believed this was fair, beyond a feeling that the value share would be a small proportion of the commercial ventures’ revenue and could greatly benefit the NHS.

b) Engagement with NHS data controllers

The CIDC presented the principles to a range of NHS data controllers, including local NHS commercial, research and operational leads, research organisations, and the wider NHS, including NHS Digital (now part of NHS England).

c) Engagement with users of NHS data

The CIDC consulted a range of users of NHS data including the NHS England Data for Research and Development Programme health data user group (a collection of approximately 400 interested parties seeking to learn more about Data for Research and Development Programme investments), the BioIndustry Association and individual companies and innovators.

The CIDC presented the principles to a group of universities at a roundtable in November 2022.