What do we mean by public benefit?
In her latest blog, Dr Nicola Byrne discusses the new National Data Guardian guidance, and how enabling better public benefits evaluations will lead to increased public trust.
Dr Nicola Byrne, National Data Guardian for Health and Social Care
I’ve always enjoyed a wrestle with language. Saying what you mean and meaning what you say can be tricky, not least when we find ourselves ‘divided by a common language’. Discussions about data are no different. Reassurances that a use of people’s health and care data will be ‘for public benefit’ quickly evaporate when we find that phrase can mean (sometimes significantly) different things to different people.
I’m delighted then that today we are publishing 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.
This is the second output from a project that started in 2020. My team and our panel of advisors began this journey before my time as NDG. They wanted to support organisations to evaluate and demonstrate how projects that use data collected during the delivery of care will make a positive difference to society. They believed guidance that facilitates a clear and streamlined approach to evaluating public benefit could help to build trust in data use.
My mission is to support the health and care system’s shared vision of improved health and care 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 or valuable new drugs and treatments for everyone.
But for people to support the use of their data for these secondary purposes, they need to be able to trust that it will be protected and only be used in ways which benefit society.
Most of us are rightly cautious about anyone accessing our information who isn’t using it in some way to deliver our care. But most of us are also altruistic: we are much more likely to support the use of our information for secondary purposes once the benefits and protections are explained to us. The significant body of work investigating public attitudes on the uses of health and care data consistently demonstrates that people only support secondary uses of health and care data that are capable of delivering public benefit.
Given that people require secondary uses of healthcare data to be for public benefit, it follows that where an organisation is seeking access to data, how it will evaluate public benefit needs to be clear and transparent.
Yet despite the need to demonstrate public benefit, the concept can be fuzzy. Without clear and consistent interpretation, it’s difficult to explain what constitutes ‘public benefit’. This makes it difficult to apply a standard approach to prevent inconsistency. The lack of a shared interpretation by organisations evaluating public benefit can lead to duplication of the same public benefit evaluation, creating unnecessary delays.
This project fixes this issue by pouring content into the concept of public benefit. Public benefit is not a technical concept that can be reduced to a neat formula. Thus, to determine how it should be defined and interpreted we carried out a public dialogue project to let people – whose data is the lifeblood of innovation and research – have their say.
We joined up with Understanding Patient Data and UK Research and Industry’s Sciencewise programme to ask people: what counts as a public benefit? What is fair? And what different factors need to be weighed when organisations use health and care data for planning and research?
People told us how they balance the benefits and risks of uses of data and judge which benefits count as ‘good enough’. They also identified some behaviours they considered essential to the credibility of public benefit evaluations. In particular, the importance of being transparent about how evaluations are undertaken and how decisions are made. They advised that if the evaluation processes and decision outcomes were not made available to the public, this would not inspire trust in their integrity.
The report from that dialogue, Putting Good into Practice: A public dialogue on making public benefit assessments when using health and care data, was the project’s first output.
Investigating public values like this enabled us to define public benefit in a way that best reflects people’s values. As a consequence, we have been able to develop guidance that provides a clear interpretation of public benefit – one that can be applied consistently by those evaluating the public benefit of secondary data uses. Following this guidance will help organisations interpret and apply the concept of public benefit in line with current perspectives on how trust is earned in this context.
To ensure that our guidance was appropriate, we further engaged with our public dialogue participants – and also with organisations/data custodians and data users who will apply the guidance. They have helped us to refine early drafts to ensure that it is relevant, helpful, and capable of achieving its aims. A big thank you from me and my team to everyone who has supported or encouraged us in this long, thought-provoking – and we hope valuable – project. Whilst many terms used in health and care may continue to get ‘lost in translation’, I hope ‘public benefit’ in relation to data use will no longer be one of them.