Understanding Patient Data is pleased to publish and host a new report: “Sharing Health Data – lessons for the UK from the European Health Data Space”, produced by the NHS Confederation and the Wellcome Sanger Institute.

The report details the attitudes of UK respondents from of a consultation of citizens in the UK, France and Belgium with regards to the future use of their data within the European Health Data Space (EHDS). The EHDS is the first of the European Union’s data spaces, and will enable the sharing of European citizens’ health data across the EU for primary and secondary use. It is a product of the first EHDS-related Joint Action (“Towards a European Health Data Space” - TEHDAS).

The main findings are:

  • Respondents feel intrinsically tied to their own data and want to be respected as a partner in decision-making around the use and sharing of their data
  • Respondents mostly agreed or strongly agreed with their health data being used for improving health and healthcare, where there was societal benefit
  • There was a strong majority who supported sharing data for research purposes (89%), and whilst there was a significant drop when private and commercial companies were involved (to 67%), this was still a sizeable majority of support
  • Despite strong support for sharing data for research purposes, when asked if health data should only be used to provide individual patient care and ensuring the essential functioning of the healthcare system, 59% disagreed, meaning that 41% suggested it should only be used for these purposes and not for research. This is a discrepancy compared to complementary questions in the survey.
  • There were numerous responses stating their objection to commercial organisations accessing their data, and concerns about companies profiting from the use of citizens’ health data.
  • In terms of who should preside over access to this data, respondents were also quite split, with the majority supporting an expert panel and a significant minority (35%) stating that only the individual themselves should be able to make this decision.
  • There was overwhelming support for citizens receiving information when a research project is complete, outlining how their data was used, the results of the research, and its relevance to an individual’s health.

The report comes at a time of significant development for data policy in the UK and EU. In the UK, there are activities underway to understand public attitudes and hopefully implement policies that reflect these, such as the large-scale public deliberation by the Department for Health and Social Care and NHS England, and public deliberation on the use of health data for clinical trials in Wales. Whilst in the EU, on the 14th March 2024 the European Council and Parliament reached a provisional deal on the European Health Data Space, regarding the following areas:

  • opt-out: member states can allow patients to opt-out on the use of their health data being accessed, whether by a healthcare professional (primary use) or for further use (secondary use, always under strict conditions), except for purposes of public interest, policy making, statistics and research purposes in the public interest
  • restricted information: if patients choose to restrict information, healthcare professionals will only be able to access restricted health data in situations of vital interest
  • sensitive data: member states may put in place stricter measures governing access to certain kinds of sensitive data, such as genetic data, for research purposes
  • trusted data holders: in order to reduce the administrative burden, member states may establish trusted data holders that can securely process requests for access to health data
  • clinically significant findings: if researchers inform health data access bodies (HDABs) about findings that may impact the health of a patient whose data was used in the scientific research, the HDAB may inform the trusted data holder who has to inform the patient or the relevant treating health professional about these findings

Despite these policy and legislative advances, significant challenges remain. UPD’s recent experience of participating in a panel discussion at Privacy Camp in Brussels, focusing on the EHDS, demonstrated that there are still concerns about people’s rights, and whilst delegating powers to member state levels for opt-outs, for example, might be more politically feasible and better accommodate each country’s cultural views towards the use of data, it might dilute some of the benefits of the platform or lead to some groups of people’s data missing more from the platform than others. There is an offer of an opt-out available to all, but the list of potential exceptions is significant, and could be open to interpretation and misuse. Furthermore, if anonymisation and pseudonymisation can be done by either the data holder or the data access body, who carries the risk and what form of redress to citizens have if they are intentionally re-identified (and feel wronged/harmed)?

These developments and the associated concerns demonstrate that there are numerous areas where it remains mutually beneficial for the UK and European member states to collaborate and is in fact imperative for us to share mutual learning in order to unlock the potential of health data.  

“My data on its own is almost meaningless, but that same data in a well governed health data space becomes more meaningful for everyone. Continued collaboration between the UK and EU institutions is beneficial for all citizens.” Wannes Van Hoof, Sciensano, Belgium  

This is why we are looking forward to the next milestone in the development of the European Health Data Space, the “Towards a European Health Data Space 2” Joint Action, which commences this summer.

Interested parties in the UK will continue to actively seek opportunities to support our European counterparts throughout and beyond TEHDAS II, and we hope the publication of this UK-specific report can act as another step in this ongoing process of collaboration.

Read the full report here

For further information:


Sarion Bowers – Head of Policy and Advocacy, Wellcome Sanger Institute

James Maddocks – International Policy Advisor, NHS Confederation

Nicola Hamilton – Head, Understanding Patient Data