Polka

The project facilitated the consultation of the European rare disease community at large, with the aim of building consensus on preferred public health policy scenarios for rare diseases.

Patient debates on five to seven carefully chosen, rare disease public health policy themes were launched using a variety of methods such as the DECIDE game. Each debate introduced a policy scenario and will ask patients to vote.

Rare disease material was developed by experts and patient representatives for use in Polka: information packs, fact sheets, and possible policy scenarios. Moderators in various Member States organised debates with up to eight patient representatives per debate. In total, the project facilitated between 600 and 1,000 discussions across 27 countries, in 21 languages, with a minimum of 80 participants per country! Similar sessions were organised by Ecsite in museums and science centres to collect the point of view of the general population and draw useful comparisons.

List of project partners

 

Polka was supported by the European Commission and a Donors Committee composed of three pharmaceutical companies CSL Behring, Novartis and Sigma Tau Pharmaceuticals

Resources

Report
Polka brochure cover

Summary description of the Polka project (2009-2011), aimed at fostering the opinion of patient representatives on future European policies for rare diseases, or to collect their views on existing ones.

Contains a description of the Playdecide game.

Category:
Education & learning, EU and governance
Keywords:
patients, rare disease, medicine, healthcare, Polka, policy