Citizens want their health data used for innovation

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Although there is a lack of trust in government, Dr Layla McCay, director of policy at the NHS Confederation, says citizens are not opposed to their data being used for innovation.

To achieve the ambitions of its life sciences vision, the government recently announced that £200 million will be invested in the development of Trusted Research Environments (TREs), with the aim of providing researchers with better access to NHS data, faster, while maintaining the highest levels of confidentiality to pave the way for advances in cutting-edge medical advances and treatments.

TREs indeed offer the gold standard in data security offering a way to store and use data for research without the data simply being given to those who wish to make use of it, researchers having to come to the data instead of the data given to them.

It also means that TREs provide a level of transparency about who is accessing the data, how they plan to use it, and what the results of that use will be. While this is an oversimplification of how TREs work, it should, in theory, provide more reassurance to the public that their data is safe and used in a way they would support.

However, after the fallout from the GP Data for Planning and Research (GPDPR) program last year and Care.data before that, public confidence in the government’s use of data is at an all-time low. In such an environment, can citizens really believe that SRTs will live up to their name?

Build trust

The Secretary of State for Health and Social Care, Sajid Javid, recently made positive remarks about the need to invest in building public trust in data reuse, and although we don’t yet know how this new investment will be distributed, we can hope that the government will learn from previous mistakes and anticipate the risks that current public opinion on data sharing poses to the success of this project.

It was the inability to engage the public, listen to their concerns and act on their wishes that gave the impression that a government was trying to seize public data to sell it to the highest bidder, which ultimately led to the downfall of the GPDPR.

However, this has not only been a challenge in the UK or in data policy, strong public engagement has always been an underfunded asset in policy-making at all levels.

Fortunately, this is changing and the NHS Confederation has been involved in a number of data-specific public engagement strategies across the UK and Europe which can provide insights and opportunities for the UK.

Joint action

An example is the ongoing development of the European Health Data Area or TEHDaS. TEHDaS is a joint EU action aimed at developing the infrastructure and the legal and ethical considerations that need to be taken into account to enable the sharing of health data across national borders for secondary purposes.

What we have seen from our participation so far is that despite the current low trust in government use of data, many citizens already share a desire for health data to be leveraged in the pursuit of innovation.

The NHS Confederation is currently working in partnership with public bodies in France and Belgium to organize a citizen consultation allowing the public to share their point of view on how their health data should be collected and used. When the consultation ends in April, it will provide insight into how citizens of the three countries want to engage. For now, the consultation is still ongoing; you can share your opinions here.

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