Involving the public across the spectrum of health data usage

I recently co-led a virtual workshop for patients and the public about future opportunities and factors that influence acceptance of the European Health Data Space (EHDS). [1] The EHDS is a new initiative of the European Commission for a portal of health data resources across Europe. [2] The initiative is still in an open consultation phase. The EHDS aims to accelerate research which uses health data, and to enable individuals to have access to their own health records across borders. 

The participants at the virtual workshop were patients and citizens from across Europe, plus representative organisations interested in using health data and offering an early adopter insight into the data landscape that we need to be preparing now, for much wider future public engagement. 

The EHDS is proving a catalyst for a wider consideration of health data. I have co-led several stakeholder consultation events over the past year on the re-use of health data, and one cross-cutting message is that we need more alignment between the approaches taken to data, data management, and data protection across the different infrastructures and data ecosystems, across countries. [3] So much learning from data nowadays needs to happen on a multi-country scale. 

I have focused here on this workshop, not because it was unique or uncovered novel insights. Rather, the opposite. It reinforced and consolidated multiple factors which influence acceptance that I have heard from public and patient stakeholders over many years. 

Participants at the workshop made it very clear that they would like greater access to their clinician-created health data, in a computable form that they can import into apps and generate charts to monitor their health trajectories, and to combine this with self-collected data. They would like greater clinician interest in the data they choose to collect, between clinic visits, to enrich the picture available for joint decision making. This need not lead to information overload: trends and charts are quick to digest, but we need greater investment in smart technologies that can quickly highlight exceptions and deteriorations.

Patients would like to compare the progression of their outcomes with similar patients, anonymously, which can be done while conforming to data protection legislation. The Innovative Medicines Initiative project, H2O, is seeking to deliver precisely this in four countries and in three initial disease areas. [4]

There is more public support for the reuse of health data for research than is often realised. However, research must be well done and must target knowledge and products to deliver direct healthcare benefits which are affordable to the majority of the population. This could be an improved care pathway, or a new drug, device, or algorithm. It was less important to our participants whether the research organisation is academic or industry funded, a sentiment echoed in a recent citizen’s jury findings.[5]

Inevitably the biggest concerns for participants were data protection and transparency. However, they accepted that perfect anonymisation can make data unusable for purposes such as AI development. A balance is needed between the drive for perfection in anonymisation and getting useful value from the data. This is not an easy balance for data protection decision-makers to find on their own. Greater public involvement is vital.

Individual control over who uses patients’ data, by seeking consent for every data use, is sometimes promoted as the ideal solution, but this is not currently scalable across the huge numbers of people and research queries that are desirable for us to enable. The forthcoming European Data Governance Act proposes a new basis, through the concept of data altruism, that we should monitor with interest. [6]

Another important safeguard is transparency about who is using data, for what purposes, how they are safeguarding it, and what societal value is anticipated. If we anonymise data, we can’t tell individuals about how their own data have been used (until distributed ledger technology is more widely deployed), but we can be transparent to populations about how certain datasets (in which they might have been included) have delivered societal value.

I would like to see greater investment in open discourse with all strata of our population so that everybody feels included and all opinions are heard. There are important public awareness initiatives such as Data Saves Lives and Understanding Patient Data that are already active in explaining health data uses to the public, which should be promoted and strengthened. [7,8] These issues and themes surrounding health data will be explored by The BMJ as they will co-lead a session “Discussing Health Data between access, control and ownership” at the European Patients’ Forum’s (EPF) virtual Congress 2021 on the digital transformation of healthcare in October.

I believe we need to recalibrate our approach to data protection, to how we value health data as a societal good, and how we deliver transparency to the public. This is what I have absorbed when speaking with patients and citizens about how they feel about their health data being used. 

The virtual EPF Congress takes place from the 26-29 October 2021. Patient advocates and health NGOs are eligible for complimentary registration prior to 1 September 2021. Registration and Programme details available at  

For more information about the European Patients’ Forum (EPF), visit 

Dipak Kalra, President, The European Institute for Innovation through Health Data (i~HD), Retired Professor of Health Informatics, UCL, Visiting Professor, University of Gent.

Competing interests: none declared.


[1] DigitalHealthEurope Consultation with citizens/patients on the European Health Data Space. Available from 

[2] European Health Data Space. The European Commission. Please see 

[3] Calls to Action on Health Data Ecosystems. Recommendations from multi-stakeholder round tables. Available from CTA-Health-Data-Report.pdf   

[4] Stamm T, et al. Building a Value-Based Care Infrastructure in Europe: The Health Outcomes Observatory. NEJM Catalyst 2021.

[5] Tully, MP,  Hassan, L,  Oswald, M,  Ainsworth, J.  Commercial use of health data—A public “trial” by citizens’ jury. Learn Health Sys.  2019; 3:e10200.

[6] Proposal for a REGULATION OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL on European data governance (Data Governance Act). Available from 

[7] Data Saves Lives. Please see 

[8] Understanding Patient Data. Please see