Last month, to support NHS organisations to negotiate fair terms for data partnerships with third-party organisations, NHS England published a value sharing framework and accompanying guide to data partnerships. Understanding Patient Data (UPD) Policy and Engagement Manager Emma Lagerstedt outlines what these publications mean and reflects on what ‘fair’ means for NHS data partnerships.
In the year of its 75th birthday, the NHS in England faces more challenges than ever, such as achieving historic cost savings, delivering large-scale service transformation, and implementing its first comprehensive workforce plan. As pressure is mounting, it is hoped that data and digital innovations will be able to deliver efficiencies, improve performance and improve care for patients.
But the NHS can’t go at it alone. In order to achieve the much heralded ‘unlocking’ of health data, the NHS is increasingly turning to partnerships with academia, charities and industry to combine expertise and resources and deliver data innovation. Indeed, encouraging these data partnerships is one of the six priorities set out in last year’s Data Saves Lives Strategy.
The data held by the NHS is considered one of most valuable data assets in the world, expressed both in commercial value and in the value it can provide to patients,[1] raising questions about how to ensure this is captured and recognised in data partnership agreements. Whilst research shows that the majority of the public support commercial access to data for research,[2] many people remain sceptical of health data generating profit. One recent survey found that only 6% of the public are comfortable with data generating profit in any scenario, 25% if it also generates public benefit, and 35% if some profit is reinvested in the health system, but 29% were uncomfortable with any profit generation.[3]
The Framework and the Guide
In recognition of the need for more clarity in this area, in July 2023 NHS England (NHSE) published a new Value Sharing Framework, fulfilling a commitment set in the Data Saves Lives strategy. The Framework is a “set of guiding principles to help NHS organisations negotiate fair terms for NHS data partnerships” and aims to simplify and accelerate partnership negotiations.
- Principle 1: Cost of access should not prevent good use of data
- Principle 2: The NHS will always charge a fee for accessing health data
- Principle 3: The cost of access should depend on how data is being used
- Principle 4: The NHS should share in the value created by its data
Alongside the Framework, NHSE has also published a Guide to Effective NHS Data Partnerships (also a Data Saves Lives Strategy commitment) which provides guidance for individuals and organisations in the NHS to develop and deliver new data partnerships, from starting to think about a partnership through to the creation of a governance strategy.
UPD’s thoughts
Understanding Patient Data (UPD) welcomes the broad ambitions of these publications as they provide necessary clarity for both NHS organisations and third-party organisations looking to partner with the NHS. The additional guidance and support provided in the Guide along with the principles in the Framework will hopefully lead to a more uniform approach to data partnerships and make the process more straightforward, resulting in more successful collaborations. We also welcome the principle of the NHS seeking to share in the value created by the use of its data. This is a big step forward as previous guidance only stated that the NHS should agree “fair” terms.
However, questions remain about how the principles set out in the two documents will be implemented on the ground. As NHSE notes in the introduction to the Framework, though “the principles of the framework will remain constant, the details of the value-sharing arrangements they shape will evolve over time.” Whilst arrangements will need to vary depending on the project and the data being used, the guidance for determining the value of NHS data in the Guide is very broad and may result in variation in the valuation of similar datasets across different partnership agreements. More guidance from the Centre for Improving Data Collaboration (CIDC) for organisations on how to assess the NHS’s contribution to the value generated would be helpful to drive consistency.
Whilst it is positive that the Framework will be mandatory in certain national investment areas (such as the creation of the NHS England Research Secure Data Environment Network), it will only be “strongly recommended” for other data partnerships. This enables more autonomy at a local level, but, as mentioned in the Guide, previous guidance was applied in different ways, leading to unwarranted variation and hindering partnerships. The lack of a mandate to implement the Framework is likely to repeat this and lead to variation in uptake and outcomes, with some NHS organisations better able to secure more value than others. This may be a cause of concern as our research shows that a vast majority of people believe the benefits of data partnerships should be shared equally across the country.[4]
The Framework recommends moving away from a model in which the cost of access to data depends on the nature of the partner organisation (e.g. academia vs industry), and instead move to one that is based on “how the data is used and the type of data requested”. Whilst UPD recognises that there are costs involved and these need to be covered in some way, we have heard concerns that treating all organisational types equally without regard for ability to pay may ‘price out’ smaller teams, particularly in the charity and academic sectors, and care must be taken to ensure that partnerships with these organisations remains feasible. We recognise that the intention is to ensure that these organisations – particularly when using data for non-commercial purposes - can still access data and NHSE’s willingness to keep this under review. However, more communication and clarity for researchers is needed around how different use cases will be valued.
In addition, the publications are a missed opportunity to make a strong case for increased transparency and public involvement in NHS data partnerships. Our Foundations of Fairness report with the Ada Lovelace Institute found that the vast majority of people expect the NHS to publish information about health data partnerships. Despite this, the same report found that 63% of people were unaware that the NHS grants access to data to private sector organisations. More needs to be done at all levels to demonstrate transparency and engage the public on how their data is used as this will be critical to maintaining public confidence and trust. There is an opportunity now to translate the Framework and Guide into realistic, transparent cost models that can be tested and talked about, to combat misconceptions about data being sold. The UPD team looks forward to bringing clear and transparent communications to the public on this point, and welcomes NHSE’s commitment to work with us on this.
Finally, the same report finds 74% of people believe that the public should be involved in decisions about how NHS data is used. Given that NHS data is generated by people’s interactions with the health service, there is a clear case to be made that the public should have a say, though we recognise this can be difficult in practice as it can be burdensome. We were pleased to see that the Commercial Principles were consulted on through a large-scale survey and several public deliberations, but public engagement on the value of health data cannot be seen as a ‘job done’. Future models of NHS data partnership should take this requirement seriously and move toward a system wherein patients and the public are empowered to help define what the right governance models are, what acceptable uses of data are, and what it means to truly deliver fair returns to the health service, partners, and patients themselves.
To learn more about our research with the Ada Lovelace Institute on data partnerships, read the summary report and the full results of our public engagement programme. We have also worked with other organisations to evaluate ‘public benefit’ in the use of health data.
To find out more about our work, drop us an email at hello@understandingpatientdata.org.uk.
[1] Ernst & Young, Realising the value of health care data: a framework for the future, 2019
[2] Ipsos MORI and Wellcome, The One-Way Mirror: Public Attitudes to Commercial Access to Health Data, February 2016
[3] Boston Consulting Group, Towards a Healthier, Wealthier UK: Unlocking the Value of Healthcare Data, July 2023
[4] Understanding Patient Data and Ada Lovelace Institute, Foundations of Fairness: Where next for NHS health data partnerships?, March 2020