EPF co-signs joint statement calling for a society-centred EHDS

EPF, among a number of other not-for-profit organisations, co-signs a joint statement to call for a society-centred digitalisation of healthcare. Read the statement below.

A society-centred EHDS - EPF signs joint statement alongside other NGOs

With not-for-profit organisations, representing patients, healthcare professionals, hospital pharmacists, payers, and healthcare institutions, EPF calls on European policy-makers to ensure a more coherent, fair, and society-centred approach to the European Health Data Space (EHDS).

Interest of society to prevail over the market

When it comes to healthcare, research and sensitivities linked with health data, the interest of society must prevail over the market. In short, we ask:

• Not to support strengthened provisions for IP rights and trade secrets.
• To include provisions on public return on data investment. For instance, if due to the EHDS research area medicine and/or treatments are developed and used commercially, conditionalities should apply, such as:
  • a requirement to make use of research results public and license them freely to enable other parties and not ‘lock in’ the acquired knowledge within one entity, regardless of whether or not the research led to the desired outcome;
  • a requirement to accept accessible price caps for those medicines, thus acknowledging the societal contribution of data as valuable input into the research outcome.
• To incorporate a wider range of civil society representatives into EHDS governance. 
• To foresee sufficient time to develop and implement the EHDS. 

EHDS brings big changes, discuss thoroughly

The European Health Data Space proposal is set to bring an enormous change to the way European healthcare systems are organised and how health data is processed. We ask policy-makers not to take this task lightly and discuss the EHDS proposal thoroughly.

Read the full statement here.