EPF Training on Transparency & Ethics: “Reputation is Essential Currency for Advocacy, Protect It!”

Because of sensitivities around healthcare issues and the complex environment in which they evolve, ethics and transparency are an absolute priority for patient organisations. But how do you ensure your organisation meets the highest degree of integrity and accountability?

This is the question the eleven participating organisations aimed to answer during the three-day-training organised by the European Patients’ Forum in the framework of its capacity-building programme.

“To be solid, a house needs good foundations. So do patient organisations. They have to be built on appropriate policies and procedures which will ensure transparency and accountability”, said Eleni Zymboulaki from the Cypriot coalition of patient organisations.

Beyond codes of conduct

It is interesting to note that when thinking of transparency, most patient organisations think of cooperation framework with industry and sponsors, when in fact, transparency and ethics have much broader implications.

While codes of conduct and clarity in financial policies are certainly a part of it, transparency also means ensuring your membership is representative and meets legitimacy criteria or making sure you have clear governance and management rules.

Communicating the steps you take to be transparent to your members and external stakeholders is also important. Thus, some of the participating patient associations realised that they already have provisions to ensure the transparency and credibility of their organisations, but that this information is not available on their website or in their annual report.

Reputation, your currency for advocacy

Among the highlights of the training, the session on transparency in advocacy led by Yannik Bendel from the Transparency International EU’s Office: “Reputation is essential currency for advocacy, protect it!”, he said, inviting patient organisations to join the EU transparency register and to publish their lobbying meetings on their website.

When it comes to cooperation with industry, the key principles are independence, mutual respect, and unrestricted funding: “Walk in as equal partners”, recommended Noémi Ambrus who facilitated the training. “Ideally, NGOs’ funding should come from at least four different funding sources”, she added.

On the last day, the participants set individual development goals for their respective organisations for the follow-up phase. “The training was very useful for us as we are currently reviewing our internal policies and procedures”, said Donna Walsh from the European Federation of Neurological Alliances. “It sparked lots of ideas and gave me some food for thought in how we advance this process”.

Beyond improvements for each individual organisation, the meeting aimed at starting a collective reflection on the accountability of patient organisations: “Supporting Patient organisations’ work on transparency and accountability helps the whole patient movement to advance”, concluded Marko Perovic, from the European Federation of Crohn’s and Ulcerative Colitis Associations.

Camille Bullot

Camille Bullot

Camille Bullot is Director of Operations & Engagement at the European Patients’ Forum. As such, she oversees the efficient and effective day-to-day operations of the organisation, ensuring the smooth delivery of EPF’s work plan. She also coordinates stakeholders’ engagement with the goal to enhance the organisation's visibility and profile.

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Camille Bullot

About Camille Bullot

Camille Bullot is Director of Operations & Engagement at the European Patients’ Forum. As such, she oversees the efficient and effective day-to-day operations of the organisation, ensuring the smooth delivery of EPF’s work plan. She also coordinates stakeholders’ engagement with the goal to enhance the organisation's visibility and profile.

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