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TEHDAS consultation: people support health data use with solid safeguards

People recognise the social benefits of sharing health data, but are concerned about the potential risks related to its use. For citizens, achieving a balance between the benefits and risks is a key condition for the wider use of health data.

People in Europe understand the benefits of the use of their health data for purposes other than treatment, but are concerned about risks to privacy, according to a public consultation organised by TEHDAS. The overarching public perception is that health data could be used to improve public health as long as there are sufficient safeguards to protect privacy.

A recent report of the joint action Towards the European Health Data Space (TEHDAS) summarises public perceptions of how health data could be used in the future. Opinions were sought via an online consultation between December 2021 and May 2022 mainly in France, Belgium and the UK. Participants contributed close to 6,000 suggestions about the secondary use of health data to the consultation.

“We are very pleased to have received such a high number of contributions and would like to thank all the participants. Many respondents recognised the power of data and shared concerns that they want a legal and policy framework to address”, says Louise Mathieu from Sciensano, one of TEHDAS partners responsible for citizen engagement.

Data to be used in the public interest

The purpose of data use and who will benefit from it have a major impact on people’s perceptions and preferences. According to the respondents, the secondary use of health data should be in the public interest. People support the use of their health data for research and policymaking to improve public health, but tend to be hesitant about their data being used for commercial purposes not in the public interest.

Many respondents were worried that technology may not be able to provide comprehensive data security, and some considered data anonymisation as way to further improve security. Anonymisation means that data can no longer be linked to any specific individual. The respondents also believed that the safeguards used should be proportional, tailored to the type of data in question.

Trust and citizen involvement are crucial to a data sharing framework

The results demonstrate that using sensitive health data necessitates citizens’ trust which is built up through transparency and open communication. Respondents said that a solid legal framework for the secondary use of health data could mitigate risks. But there needs to be trust in the authorities responsible for the data sharing framework and many felt that they should have the option of being consulted in this process.

The respondents felt that such a framework could complement the General Data Protection Regulation (GDPR) and should define authorised data users and the purposes for the secondary use of data. They also felt that the framework should respect social values and acknowledge the collective nature of the secondary use of health data, determine accountability and anticipate preventive measures and sanctions in case of data abuse. Many also felt that ethical standards should be defined in a code of conduct.

The outcome of the consultation also indicates that there is no consensus on exactly how the public wants to be informed and engaged in the data sharing process. Instead, people want to receive personalised information on how their data gets used.

Based on the findings of the report and four stakeholder workshops about these results, TEHDAS will issue recommendations in early 2023 on the role of citizens in the European health data space.

The Healthy Data online consultation platform aimed to inform citizens about the use of their health data for purposes such as research, decision-making and innovations and to get an understanding of public preferences on ethical and social issues related to the secondary use of health data in Europe.

The consultation was organised by three TEHDAS partners: public health research institute Sciensano (Belgium), Health Data Hub (France) and the NHS Confederation (United Kingdom) with the help of France Assos Santé.

The introduction in the report was updated on 4 July. The help of France Assos Santé added on 19 August.

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