Help us promote the patient-centred perspective on the reuse of health data – vote in a public consultation!

ELF invites you to support a joint response of the European Lung Health Group (ELHG) to an ongoing citizen consultation on the reuse of health data. This consultation is run within the EU Joint Action – Towards a European Health Data Space (TEHDAS) initiative of the European Commission. The TEHDAS project develops European principles for the secondary use of health data. At the moment your health data is mainly gathered and shared among health professionals to provide you with the best care and treatment. It can also be used for research to help prevent and cure diseases in others and improve public health overall.

Our contribution to this consultation is based on a recent policy brief on future European Health Data Space from the ELHG. The brief outlined four priority areas relevant for the consultation:

• Facilitate virtual and in-person care for people with lung conditions;
• Increase access to quality care and information;
• Be clear about data use and encourage patients to participate, and
• Allow effective research on lung disease.

The responses of our group are already published on the platform (submitted by Isabel Proano from the European Federation of Allergy and Airways Diseases Patients’ Associations – EFA) and are currently in the public voting phase. The deadline to vote is 29 April 2022.

Please follow these steps to participate (the process will take a maximum of 10 minutes):

1. Create an account: https://ourhealthydata.eu/participants/sign_up
2. Click on the 17 URL links that you will find listed below. Each time you will land on a separate idea page where you can vote by clicking on the heart icon in the bottom left corner under the idea
3. Share these instructions with your connections and invite them to also vote for our ideas

To learn more about this consultation and broader context of European Health Data Space please read this summary document. We very much appreciate your support of our initiative to promote the patient-centred perspective on the reuse of health data.

List of links (please vote by “liking” each idea separately):

1. https://ourhealthydata.eu/topics/1398/entries/18430
2. https://ourhealthydata.eu/topics/1398/entries/18548
3. https://ourhealthydata.eu/topics/1398/entries/18549
4. https://ourhealthydata.eu/topics/1398/entries/18550
5. https://ourhealthydata.eu/topics/1398/entries/18551
6. https://ourhealthydata.eu/topics/1400/entries/18552
7. https://ourhealthydata.eu/topics/1400/entries/18553
8. https://ourhealthydata.eu/topics/1400/entries/18554
9. https://ourhealthydata.eu/topics/1400/entries/18555
10. https://ourhealthydata.eu/topics/1399/entries/18556
11. https://ourhealthydata.eu/topics/1399/entries/18557
12. https://ourhealthydata.eu/topics/1399/entries/18558
13. https://ourhealthydata.eu/topics/1399/entries/18559
14. https://ourhealthydata.eu/topics/1399/entries/18561
15. https://ourhealthydata.eu/topics/1399/entries/18562
16. https://ourhealthydata.eu/topics/1452/entries/18563
17. https://ourhealthydata.eu/topics/1452/entries/18564