Transparency is our legitimacy currency: let’s protect it!

As patient organisations we are under enormous pressure to prove our credibility. The main topic we work with, health, is a highly sensitive one, and we are often scrutinised from multiple sides. Our relationships with regulators, healthcare professionals and industry, and the possibility of (perceived) conflicts of interests reinforce the need for a high degree of integrity and accountability.

Why has EPF developed some guidelines on transparency?

Transparency is a multi-dimensional process: it applies across all the organisation’s activities, from membership criteria and governance rules, to its cooperation agreements, its advocacy efforts and its financial resources. But what are the actual rules that one should respect, and what are the processes to implement and monitor them in your organisation?

Our newly published Transparency Guidelines” try to answer these and other questions. Because transparency is a broad topic, the publication we are presenting does not intend to be exhaustive. Rather, we hope it will trigger some reflection within our own organisation, our members and other organisations working with patients and healthcare. We hope it will provide some information and resources to guide you in fostering transparency within your own organisation.

In developing these guidelines, our goal was not to enter into a “blame and shame” game, but rather to identify good practices and encourage patient organisations to take steps towards increased transparency.

What can I find in this document?

The publication is divided into 7 chapters dedicated to specific areas: Membership, Governance, Finances and Cooperation with Funding Partners, Advocacy, and Communications.

These topics are vast and in the coming months we will share with you a more detailed insight into each of them but you can already navigate the full publication here.

What methodology have we used?

These transparency guidelines are the result of a collective reflection initiated in EPF with a Training Programme on Transparency & Ethics during the summer of 2016 and it was further enriched by representatives from EPF members organisations who contributed to each of the sections by sharing the experience of their organisations or sometimes their own questions.

A final note: “and if I’m not perfect?”

The European Patients’ Forum has developed this toolkit first and foremost because we are aware that we are not perfect. We want to share knowledge all along this process, to support our members but also to promote our own efforts towards the greatest possible transparency. We are conscious that we still have a long way to go. As a learning organisation, we are committed to taking the steps and implement the processes that will enable our organisation to lead by example, in line with our ethical values.


Do you have any comment? Do you want to write about your experience within your organisation? Get in touch with our Membership and Capacity Building Officer Elena Balestra: