NDG guidance enabling better public benefit evaluations when data is to be used in planning, research and innovation
The National Data Guardian has published new guidance to help organisations carry out better public benefit evaluations when they are planning to use, or allow access to, data collected during the delivery of care for planning, research, and innovation projects.
Summary
- The National Data Guardian has published new guidance to help organisations carry out better public benefit evaluations when they are planning to use, or allow access to, data collected during the delivery of care for planning, research, and innovation projects.
- It aims to improve public benefit evaluations by defining and standardising a concept that has previously lacked a clear interpretation or understanding.
- It is underpinned by a bespoke public dialogue that investigated what people regard as public benefit in this context – ensuring that the public’s views on, and definition of, public benefit factor into data access decision-making.
The National Data Guardian, Dr Nicola Byrne, has today released new guidance, What do we mean by public benefit? Evaluating public benefit when health and adult social care data is used for purposes beyond individual care, informed by a targeted dialogue with the public, to support her mission of improved health and care outcomes for all through the safe, appropriate, and ethical use of data.
The guidance will improve the quality and consistency of the public benefit evaluations organisations carry out when they are planning to use, or allow access to, data collected during the delivery of care for planning, research, and innovation projects.
Research demonstrates that for the public to consider a secondary use of health and care data appropriate and acceptable, it must deliver a benefit back to the public. This guidance will help the system to interpret and demonstrate public good more comprehensively, accurately and consistently.
The guidance defines public benefit by using evidence gathered from the public. In doing so, it pours content and meaning into a concept that has previously lacked a clear definition. It is intended to create a shared understanding of public benefit across the sector. The goal is to improve and standardise evaluations to support better and more consistent decision-making by data custodians about who can access data the data they hold, and for what purposes.
To inform the contents of this guidance, the National Data Guardian and Understanding Patient Data, supported by UK Research and Innovation’s Sciencewise programme, carried out a public dialogue project Putting good into practice: a public dialogue on making public benefit assessments and published its findings in 2021. The dialogue delivered an understanding of what people consider to be a public benefit when health and care data fuels healthcare planning, research and innovation. It also assessed how people weigh the benefits and risks of sharing, and judge which public benefits count as ‘good enough’.
Public dialogue participants, data users, data custodians and policymakers reviewed the guidance during production to ensure it was relevant, helpful, and practical to implement.
National Data Guardian, Dr Nicola Byrne, said:
It is my mission to support the health and care system’s shared vision of improved health outcomes for all through the safe, appropriate, and ethical use of data. This vision relies on earning the public’s trust in the use of their data by those who can unlock its potential to deliver improved healthcare services and develop new and improved treatments.
Public engagement consistently confirms the need for use of health and care data to be of benefit to the public. Thus, better evaluations of how the public will benefit from projects which use health and care data for planning and research are a key aspect of earning public trust. Following this guidance will help organisations interpret and apply the concept of public benefit in a way that accurately reflects people’s views on how trust is earned in this context.
Kirsty Irvine, Chair of the Independent Group Advising (NHS Digital) on the Release of Data, said:
I am delighted to support this guidance, which I trust will prove to be an essential point of reference for data custodians. The product of extensive public engagement, ‘What do we mean by public benefit?’ firmly establishes the importance of transparency to help build the public’s trust and confidence in the use of their data. It also acknowledges that there may be commercial aspects to the use of health data - and gives a helpful steer on how to assess the public benefit in these complex cases.
Professor Andrew Morris, Director, Health Data Research UK, said:
This important guidance from the National Data Guardian on what constitutes public benefit should be a game-changer for every research project that uses health data. We know the imperative to demonstrate trustworthiness in health data research and this guidance encourages studies to determine and demonstrate what public benefit the data is delivering.
We will be sharing this guidance with our partners and with the members of the Health Data Research Alliance. We are committed to supporting Nicola and her team in enabling the uptake of this guidance by embedding the outlined recommendations on public benefit evaluation in the Innovation Gateway data access management system for data custodians.
Jacob Lant, Head of Policy, Public Affairs, Research and Insight at Healthwatch, said:
Our work has repeatedly shown that people are broadly happy for their health data to be shared for research purposes, as long as it is used for public benefit. Yet in practice, we have seen public confidence in data sharing fall because policy makers and professionals haven’t taken the time to build the necessary trust.
This guidance is a welcome step towards increasing transparency and clarity around the benefits to data-sharing. Crucially, the public engagement underpinning the guidance demonstrates that it is responding directly to public views, which is an important step towards rebuilding public trust.
Note to editors
The National Data Guardian has released a blog to support the launch of this guidance.