TEHDAS forum attracts almost 700 European stakeholders to discuss health data in Europe
The latest TEHDAS findings and the long awaited Commission proposal on the European health data space prompted a large crowd of European experts to actively advocate how to make the most of health data sharing and use in Europe.
TEHDAS, the joint action Towards the European Health Data Space, held a forum online and in Helsinki on 14 June that focused on the current developments of the European health data space (EHDS), the proposal published by the European Commission in May, and the TEHDAS findings in support of the proposal. The forum convened almost 700 European health data stakeholders in with speakers from the industry, public sector and research.
The discussion highlighted individuals’ right to their data, trust as an enabler of data sharing and use, the importance of ensuring data quality and the future of the EU’s health policy. A main message of the European health data stakeholders is that to reap the full benefits of wider health data sharing and use, people’s trust and communication on the advantages of data use are needed.
In his opening remarks, Sitra’s President Jyrki Katainen highlighted the importance of building a fair data economy, with health being one area.
“At Sitra, we believe data is the fastest increasing raw material. First, we need to build a well-functioning sustainable regulatory environment. Second, we want to encourage public and the private sector to share and more data especially for health services.”
“In a good regulatory environment the interests of individuals, societies and companies are balanced. This is a great chance to create something groundbreaking. We need a single market of health data.”
In a good regulatory environment the interests of individuals, societies and companies are balanced.
Jyrki Katainen, President of Sitra
Citizens as actors of health data sharing
Rosie Richards, the head of European data and research policy at the NHS Confederation shared initial findings from the consultation TEHDAS ran for Europeans. In general, citizens recognise the benefits of the secondary use of health data, but are concerned about the potential risks related to it and finding the balance between the benefits and risks. There is no consensus on how the public want to be engaged.
The more than 5000 consultation replies are currently being analysed and conclusions will be published in the summer.
Next, the aim is to focus on how to engage individuals in data sharing.
“Can we make citizens as actors in health data sharing? In addition to trust, we need communication on why we need the data and how individuals will benefit from the use to make them part of the sharing process”, explained Marc Lange, Secretary General, EHTEL.
The issue of trust was also raised in the discussion of factors that impede or enable health data.
TEHDAS partners Michel Silvestri, Head of Unit, Swedish eHealth Agency and Coen Van Gool, Epidemiologist/Psychologist at Centre for Public Health Forecasting (RIVM), Head of WHO-FIC, said that barriers to cross-border sharing of health data are mostly caused by differing legal interpretations and data management practices in Europe. Contrary to popular belief technical issues were among the least mentioned barriers to data sharing.
TEHDAS has also concluded that the EHDS legislation should define the secondary use of health data, outline rules for collection, use and sharing, define anonymisation and pseudonymisation and harmonise national interpretations of GDPR.
“We encourage cross-border exchange to be considered not just for delivering cross-border care but also in the pursuit of establishing Europe as a leader in the global data economy”, said Jennifer Pougnet, Global Data Policy Strategy Lead, Roche.
Incentives needed to improve data quality
In the discussion on data quality and infrastructure, TEHDAS partner Enrique Bernal-Delgado, Senior Health Services and Policy Researcher at Institute of Health Sciences in Aragon, revealed the project’s recommendations on data quality.
The stakeholders found the TEHDAS results to be in the right direction, but encouraged the project to focus more on how quality data could be improved at source. The more detailed a patient’s information is recorded by health care professionals, the better the overall quality of the data.
“Data quality is of utmost importance to research, but quality is relative. Good data is fit for purpose. We need incentives for health care professionals to provide good quality data”, said Irene Schlünder, Scientific Consultant at TMF Germany.
Stronger Health Union for the future
A panel discussion on EU’s health policy and its future direction widened the scope from health data. Petra Wilson, Managing Director, Health Connect Partners, started off a panel discussion on stating that many EU laws already regulate health. The Treaty of the European Union (TFEU 168) states that any legislation on health should be complementary to how countries run their health systems.
We are already en route to Health Union.
Petra Wilson, Managing Director, Health Connect Partners
“We are already en route to Health Union. The EHDS gives a framework, but it is not enough. We need to take the next step”, said Wilson.
“With Covid-19, the public expected an EU level response, and they didn’t care what was stated in the treaty”, said Nick Fahy, Research Group Director for health and wellbeing, RAND Europe.
The public’s expectations of the EU in matters of health have become apparent also in the Conference on the Future of Europe, organised by the European Parliament, the EU Council and the Commission.
Fahy stated that Europe’s open decision-making processes and welfare states form a basis for sustainable health systems. “We are better placed to build health systems of the future that have citizens trust and widespread use of data than anywhere else in the world.”
The industry favours deepening EU cooperation in health. “We need more collaboration at European level. EHDS is a great next step and we applaud these initiatives. But we need to consider the context. Certain problems are better resolved on a national or local level”, said Bert Verdonck, Program Manager Health Data Spaces and Gaia-X, Philips.
EU members states have different maturity in collecting and using data for secondary purposes.
“We need to get much more out of the primary use to build trust among citizens. It might prove our citizens that European cooperation and legislation have something in it for them”, said Liisa-Maria Voipio-Pulkki, Chief Medical Officer and Senior Adviser, Finnish Ministry of Social Affairs and Health.
“Finland is a pioneer country in secondary use. Much EHDS legislation reflects the Finnish regulatory model on the secondary use of health data which brought a huge cultural change to our medical research.”
Legislative process moves into full swing
The Commission presented the EHDS proposal and the grants for member states related to it.
Louisa Stüwe, from the Ministry of Health, conveyed greetings from the French presidency. The Czech EU presidency will be taking the EHDS forward in the Council of the EU.
“The Commission proposal provides a good basis for finding the final form of the regulation. The presiding presidency will be seeking consensus on good rules that will help the health care system function better in the interest of patients, health professionals, researchers and European industry”, said Radek Policar, Deputy Minister, Ministry of Health of Czech Republic.
TEHDAS supports further work related to the proposal, and connecting and engaging with European stakeholders remains a priority. The next Stakeholder forum will take place in 2023.
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