Many of us share a ‘big picture’ vision: better health and care outcomes for everyone through the safe, appropriate and ethical use of data. The NHS can’t accomplish this vision without outside help, however.
This means that to improve the NHS and the care it provides, people who are not part of the health and social care system must be given access to people’s health and care data. We rely on the skills of brilliant innovators, researchers and experts who specialise in developing new insights, drugs and treatments. Our data, plus their skills and expertise, equals insights and improvements. After all, progress demands a partnership effort.
We know that the idea of allowing outsiders access to health data sits uncomfortably with some. Thankfully, many are reassured when the benefits and safeguards of data uses are explained to them. However, the findings from multiple public attitudes studies tell us that for people to support their information being shared in this way, those using the data must be able to explain how their work will deliver a benefit back to society.
Improving public benefit evaluations
When ‘public benefit’ is referenced as a reason to justify access to people’s health and care data, it can be unclear what that term means. Unsurprisingly then, it gets used in ways that aren’t always clear and consistent.
If we expect people seeking to access, or make decisions about data access, to be able to evidence or evaluate what counts as public benefit, we need a shared understanding about what it is. This will encourage clearer and more consistent interpretation across all organisations using and providing data and enable us to explain more clearly to people what public benefit in this context means.
That is why we have created new guidance. It is to help organisations to carry out better, more consistent public benefit evaluations when they are planning to use, or allow access to, confidential health and care data for purposes other than individual care, without people’s consent.
Who is it for?
The guidance has 2 main audiences. First, the would-be data users (those planning to do great things with data): the researchers, the service planners and the innovators. Second, the data custodians who hold our data and are responsible for making ethical decisions about who can access it and for what purposes.
We wanted to ensure that public voices underpinned our guidance
The public dialogue
Can the benefit to the public be defined without public input? We don’t believe it can – at least, not in any meaningful sense. That’s why we wanted to ensure that public voices underpinned our guidance. Only by engaging with the public to seek their views could we present this guidance as authentic and meaningful.
We can’t second guess what the public might support so we needed to hear directly from them about what they feel constitutes public benefit, and what factors they consider when determining if a use of data will benefit the public. For example, they are often willing to accept some risk if they feel that the benefit back to society is great enough.
Public dialogue gave us insight about how people weigh risks and concerns against the potential good
The guidance is the second output from a larger piece of work. The first was a public dialogue, which we delivered with Understanding Public Data and Sciencewise, and reported on in 2021: Putting Good Into Practice: a public dialogue on making public benefit assessments when using health and care data. As part of this, we spoke with over 100 people about how to make sure health and care data is used in ways that benefit people and society.
This public dialogue gave us insight about how people weigh risks and concerns against the potential good that allowing access to it could achieve.
Benefitting from the expertise of those who will use this guidance
We need the guidance to be workable and relevant, which meant involving people who will use it in their role as evaluators of public benefit. We sent an early draft to policymakers, and data custodians such as NHS Digital and its Independent Group Advising on the Release of Data, and the Health Research Authority’s Confidentiality Advisory Group. Their input helped us to refine the guidance and ensure that it would be genuinely useful. This was a group effort across the system, and so I’d like to thank everyone who had a hand in its production.
