Why the public should be data research partners

Professor Sarah Cunningham-Burley on what the public has to offer health data research

Friday 22nd February 2019

Big data looms large in every part of our lives – and health is no different.

Using data from the NHS and other sources, scientists can monitor drug safety, improve patient wellbeing and look for connections between behaviour and health outcomes.

Now a group of academics from across the world has set out key principles in the Journal of Population Data Science to guide how scientists engage with the public on the potentially thorny issue of health data research.

The lead author of the statement, Edinburgh University’s Professor Sarah Cunningham-Burley, has been telling Healthandcare.scot’s Henry Anderson why it is so important for researchers to bring the public with them in this ever-growing area of health research.

“It’s different to other forms of research,” says Professor Cunningham-Burley. “There’s been a big groundswell of public engagement in health research. Lots of projects would have patient involvement panels. But for large initiatives that are changing the way in which we are doing research…there is something that’s different.

It is particularly important to engage in large data projects because of the separation between researchers and the public they are researching, she suggests:

“The distance between the researcher and the research subject, the person from whom data is generated and used, [is greater], whereas other types of research that relationship may be much closer. There may be a researcher going out and speaking to someone or a clinician gathering data in a clinical context. So, I think that distance in itself suggests we need to engage in different types of ways”. 

There’s also the issue of consent.

Unlike more conventional studies, the public may not have expressly consented for their data to be used in large scale data-based research.

This only sharpens the need for bringing the public along and the statement’s authors admit ‘what is legally permissible is not necessarily the same as what is publicly acceptable.’

“If we’re working towards what some people call a social licence,” Professor Cunningham-Burley says, “then we need to bring publics along with that, in terms of generating something that’s socially acceptable and ethically robust in how we approach the use of data.”

Indeed, the preface to the statement refers to data projects that have failed because this social contract has not been built – public acceptance, it states, ‘cannot be assumed’.

Though some are sceptical in the light of high profile private and public sector data breaches, public confidence can still be secured.

A study in Manchester that tested individuals’ views about reusing NHS data for research purposes, found ‘many [participants] changed their minds about this complex policy question when they became more informed’.

After they had had the opportunity to question experts and deliberate among themselves, the participants took the view that ‘an individual’s right to privacy should not prevent research that can benefit the general public.’

The call to treat the public as a partner in health data research has parallels with the push to involve patients in decisions about their healthcare as part of the ‘realistic medicine’ agenda.

Realistic medicine’s lead proponent, Scotland’s chief medical officer, Catherine Calderwood, has set a target for all healthcare professionals to be using this approach – encouraging and empowering patients to make their own choices about their healthcare – by 2025.

Professor Cunningham-Burley suggests it all fits together to form the bigger picture:

“There’s this movement around public involvement and engagement more generally, and the idea of shared-decision making in health and healthcare. If you actually take from the shared-decision making at an individual level regarding your own health and you interface that into the NHS with a much, much broader framing about the direction of health-related science and the implementation of results, then we need to think about how to open up decision making in different ways.”

One way of easing concerns about health-related data research, therefore, is to involve the public in the process – dealing with weighty questions about how institutions, both public and private, share data.

Through citizens’ juries, panels of members of the public can be brought together to learn about, consider and then make recommendations to government.

In Scotland, these groups have been used to explore public attitudes on Scottish Government data-sharing rules.

Workshops with representative groups in Stirling, Inverness and Glasgow revealed general support for public bodies sharing data but also, concerns about how privacy would be protected and how officials might be held accountable for breaching the rules.

In a world dominated by smartphones and tech, there is the possibility of new areas of research, in which individuals – often through apps or social media – generate their own data for scientists to use. 

No longer are scientists solely using data gathered from when people engage with the health service, education or the welfare system.

This “citizen science” can “change the very nature of data”, Professor Cunningham-Burley suggests.

Another area where she believes effective public engagement and involvement can shape policy is around how the gains of this research – whether they be financial or health-related – move from what are often public-private partnerships into the NHS.

And Professor Cunningham-Burley says part of the answer to such profound questions lies in meaningful engagement.

“The public shouldn’t be seen as a barrier to be overcome,” she reflects, “but actually partners and people who can bring expertise to tackling some of the thorny issues that are present [in] large data-led projects.”