The public should not be seen as a ‘problem to overcome’ when it comes to health data research, a group of academics have said.

Instead, the public should be treated as partners and engaged with meaningfully throughout, according to researchers from universities across Scotland and the rest of the world.

The claim was made in a consensus statement setting eight key principles to guide public involvement in the increasingly significant area of health research based on large, often complex, data sets.

Through meaningful engagement they hope to ensure data-based health research remains ‘socially acceptable and ethically robust’.

Health-related data research takes data from a number of sources, such as NHS patient records, other areas of the public sector such as social care, education or housing, or from apps or social media.

Linked and cross-referenced together, scientists can use different bodies of data to monitor drug safety, improve patient wellbeing and look for connections between social factors and health outcomes later in life.

Examples of data-intensive research of this type include a Manchester-based project where data from implanted pacemakers and defibrillators will be collected and fed back so signs of heart failure can be detected earlier.

The academics involved say it is vital to include the public meaningfully throughout a project to assuage any concerns they might have about their data being used as ‘what is legally permissible is not necessarily the same as what is publicly acceptable’.

The authors of the statement, published in the International Journal of Population Data Science, refer to NHS England’s care.data programme as a cautionary tale.

NHS England’s plans to collate primary care data into one unified database ran aground after the organisation failed to communicate the benefits to the wider public.

Care.data was eventually shelved in the face of opposition from civil liberties groups, the BMA and the public.

Meaningful engagement is therefore needed to build up a ‘social contract’ between those researching and the wider public whose data is being studied, the authors say.

They state this is particularly important in health-related data research, because unlike other forms of health research, members of the public do not have direct contact with the scientists studying them.

Individuals can therefore feel ‘disconnected’ from their data and how it is used, making robust engagement all the more important. 

But the authors of the statement go further and suggest the public should be viewed as ‘partners’ with a ‘two-way conversation’ taking place between researchers and those being researched.

They say incorporating different public insight brings ‘real value’ and can ‘substantially improve research and governance processes’.

The main thrust of their statement, they write, is the public “should not be characterised as a problem to be overcome but a key part of the solution to establish socially beneficial data-intensive health research for all.”