Back in 2017, I wrote about general attitudes towards the sharing of health data at a time in which the potential for smarter use of data in healthcare seemed boundless. The article was based on research showing that people were generally fine with sharing their health data providing that they felt it was being put to the greater good rather than for private profit.

A recent paper from the UK Research and Innovation (UKRI) DARE UK (Data and Analytics Research Environments UK) program suggests that not much has changed in the meantime.

Trust is key

Despite the Covid pandemic having a profound impact on many areas of life, the paper reveals that the public is still happy to share their health data providing they trust that the data is stored and used appropriately. In other words, trust is key.

“Trustworthiness is at the core of everything DARE UK aims to achieve in the design and delivery of a more coordinated national data research infrastructure,” the researchers explain. “When we speak of sensitive data, this is often data about people, and it is therefore essential that this data is stored and used in ways that people feel confident in.”

The paper is the result of a series of workshops conducted to gauge public opinion across the United Kingdom. Despite being demographically diverse, the participants were generally unaware of how sensitive data is currently used in research. They were broadly supportive of its use, however, and were reassured by the measures currently in place to ensure their data is protected. Indeed, they were happy to allow their data to be used by public and private researchers alike, providing that the research is in the public’s interest.

Poor access

There was consistent surprise, however, in terms of how hard it can be to actually access data, with respondents generally keen for processes to be streamlined so that the benefits of innovation can reach the public more quickly. They also revealed that there is often insufficient public engagement in data research, and greater communication could increase support for it.

“To fully realize the benefits of health data research at scale, we must create a data ecosystem that puts the public’s trust at its heart and invites them to contribute to it in a meaningful way,” the researchers continue. “We’re pleased to see the recommendations from DARE UK’s public dialogue, and look forward to seeing them taken forward to deliver a trustworthy national data research infrastructure that supports research at scale for public good.”

The researchers plan to take the findings from the research and work with key stakeholders to ensure that the national data research infrastructure is more trustworthy, efficient, and joined-up.

“The findings of this public dialogue are vital for informing our ongoing work to improve the systems and processes supporting the use of sensitive data in research across the UK,” they conclude. “We look forward to taking them forward to make sure DARE UK’s work aligns with public expectations at every level.”