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TEHDAS stakeholders stress urgency of data sharing for improving the health of Europeans

Europe needs a sustainable strategy for health data. Without public trust, the full potential of health data cannot be realised.

The first TEHDAS Stakeholder forum gathered over 450 participants online from across Europe on 27 October. The discussions highlighted the need for common European guidelines for health data access and use and closer collaboration with individuals.

“One of the things we are lacking for more digital health co-operation is a true Health Union. It’s much broader and bigger than solving a pandemic. It’s making sure everyone has access to for example same quality level cancer screenings regardless of where they are”, said Henrique Martins, Associate Professor at Lisbon University Institute.

Europeans could live 10 years longer if they start sharing health data today.

Henrique Martins, Associate Professor

Martins recently reported to the European Parliament on the common data strategy for public health.

EU member states currently interpret the General Data Protection Regulation (GDPR) in the context of scientific research and decision-making in different ways, leading to fragmentary and uncoordinated approaches.

The European Commission’s upcoming legislative proposal on European Health Data Space is expected to harmonise the situation and bring about greater sustainability in the secondary use of health data.

The EU’s digital green certificate (Covid certificate) was discussed as an excellent example of a policy decision that brings practical value to people’s lives.

“Europe can collaborate and we should remember the feeling of being able to build something significant where both the policy goals and the technical goals were aligned and citizens are much better off”, said Ain Aaviksoo, Chief Medical Officer, Guardtime Health.

Partnership between industry and public sector needed

Health lags behind other sectors in terms of innovation. Industry is urging change. Representatives of industry stressed the importance of collaboration with those parts of the public sector responsible for regulation in building competitive advantage using health data.

Data is the direct route to innovation.

Teemu Suna, Nightingale Health

“If we want to build a healthier world, we need to have innovation. Data is the direct route to innovation”, said Teemu Suna, Co-founder and CEO of Nightingale Health, a Finnish health technology company transforming preventive care.

Two companies, Nightingale Health and Blueprint Genetics, aim to empower people by using health data. Concerning Covid-19, Nightingale Health has succeeded in detecting individuals who have a high risk of getting a severe disease by studying molecular data of healthy individuals.

Data protection and personal privacy are crucial. “We need to have secure services people can trust and understand”said Samuel Myllykangas, General Manager at Blueprint Genetics, a genetic testing company focused on inherited diseases.

Preserving patient’s quality of life

The debate also emphasised the importance of engaging individuals in sharing their health data for secondary purposes, such as research for new medicines. In the most personal exchange of the day, Birgit Bauer, Digital Health and Social Media Expert who has MS, spoke about the importance of sharing data from patients’ perspective.

When you live with a chronic disease, you live with it every day. Data can help preserve your quality of life.

Birgit Bauer, Digital Health and Social Media Expert

Patients can be supported by directing them to verified sources of information about their disease.

The need for sharing health data is not that evident when a person is healthy, which is why communication about the palpable benefits of data use is essential. Data can help save a loved one.

Public trust is essential. Citizen engagement needs to be front and center.

Rosie Richards, Assistant Director, NHS Confederation, European Office

Connecting and engaging with European stakeholders remains a priority for TEHDAS. The next Stakeholder forum will take place in June 2022.

See the agenda of the day.

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