The ETPN and its members are invited to participate in this online survey, in order to collect the views of experts and organisations representing the wide range of stakeholders, including patients, care providers, industry, public bodies and researchers. The results of the study will be used to identify possible future actions to be developed at EU level, such as new legislation or codes of conduct for health data sharing for research or policy purposes, also in light of the current COVID-19 pandemic.

How to participate?

• It will be possible to respond till Sunday 5th July 2020 as the result will be used for EU level decision making later that month. You can find the survey via the following link: https://ec.europa.eu/eusurvey/runner/Health_Data_Survey_EUHealthSupport
• If you also want to contribute to the common ETPN answer that we will prepare for this consultation, please answer this local version of the same survey before June 29th by clicking here.

Your input will be treated confidentially and answers in the final report will be formulated in such a way that they cannot be traced back to individual organisations or persons.

About EUHealthSupport: The EUHealthSupport Consortium is composed of Nivel (Netherlands institute for health services research, leader); RIVM (National Institute for Public Health and the Environment of the Netherlands); infeurope S.A.; Association of Medical Schools in Europe e.V (AMSE); Royal College of Surgeons in Ireland (RCSI), and Leginda GmbH under the Single Framework Contract ‘Chafea/2018/Health/03 – for the provision of support services for managing expert groups in the field of (public) health’. More information is available at www.euhealthsupport.eu

About the study: The study consists of the following elements:

1. A mapping and legal analysis at national level – providing an overview of legislation and governance models regarding  processing of health data
2. In-depth case studies of national governance models
3. Workshops held with (predominantly) the participation of representatives of the national ministries of health, dealing with personal data use
4. Literature review for the development of a background paper
5. Survey among experts and stakeholders to the priorities, position and needs of the actors in the field

The outcomes of the study will be used to consider which further action is needed at EU level. The first results will be used as input for a meeting of Ministries of Health in the EU (EPSCO) in July 2020, addressing the future governance for primary and secondary use of health data, to take place under the German EU Presidency.