Patient empowerment can be fun!

Rare Disease Patients can voice their opinion and propose policy scenarios with new PlayDecide Games

Rare disease patients want to be involved in the definition of strategies and plans for rare diseases that are currently being developed at national and European level. Policy makers understand the need to involve patients and citizens at large, so that decisions on science and technology reflect public needs and concerns. How can civil society, and particularly patients, be more effectively involved in decision-making? This is the premise behind Play Decide. 

“The Play Decide games are designed to empower patients and their representatives to become advocates for their cause, explains Anna Kole, Public Health Project Coordinator at EURORDIS.  “The idea of the Play Decide exercise is two-fold: to provide a structure that allows patients to feel safe while learning and discussing a topic that they may know little about, and also to equip patients with the tools they need to advocate – facts, examples, and well defined arguments. Although the tools take the format of a game, they are in fact interactive exercises intended for a very serious audience with very serious needs.”
In order to achieve this goal, EURORDIS is mobilising its extensive network of patient representatives to organise as many Play Decide sessions alongside their membership events in as many countries as possible. The target is to facilitate between 600 and 1000 group discussions across 27 countries, in 21 languages!

Play Decide is part of the POLKA project, which seeks to facilitate the consultation of the European rare disease community at large, with the aim of building consensus on preferred public health policy proposals for rare diseases.

In the scope of the POLKA project, several Play Decide games about topics concerning rare diseases will be made available to EURORDIS members and other rare disease patient groups across Europe until the end of the project. The kits are available in 22 languages in order to encourage optimum participation.

The following games are available for download in 21 European languages on www.playdecide.eu

• Stem cell research
• Pre-implantation genetic diagnosis
• Neonatal screening
• Cross-border health care
• Is there any upper limit for spending on a single patient: the case of Orphan Drugs
• Diagnosis, information to the patient and genetic counselling

EURORDIS and its partners have selected these subjects because they deal with access to treatment and orphan drugs, and with genetic issues: both areas of particular importance for rare diseases. “These issues have ethical and financial implications. They stir great emotional debate in today’s society,” explains Anna Kole. “It is therefore important that rare disease patients and their representatives are well acquainted with them when they carry out their advocacy activities.”

Patients describe their reactions to the game during the 5th European Conference on Rare Diseases in Poland, May 13 - 15 2010

The PlayDecide initiative kicked off in May 2009 at the EURORDIS Annual membership meeting in Athens. Since then, several national alliances have already promoted the games amongst their membership, and games have been organised in Denmark, Italy, Germany, Finland, Hungary and Spain. Many more sessions are planned in the weeks leading up to Rare Disease Day, and in parallel sessions of the European Conference on Rare Diseases (ECRD) in Krakow in May 2010. To promote the grass-root dynamic, awards are being reserved for those patient organisations that organise the highest proportion of games!

So, you want to become involved in decisions on critical issues that affect you and other rare disease patients and representatives? Is providing your views in surveys just not enough? Practice voicing your opinion and learn from those who may have other arguments.

Perfect your advocacy skills and have great fun. Go to www.playdecide.eu and start playing now!

To download the PlayDecide games and instructions go to: www.playdecide.eu

If you have questions about how to organise sessions in your country, contact Anna Kole at anna.kole@eurordis.org

• NCG - The National Commissioning Group, National Health Service, UK
• Rare Disorders Denmark, Denmark
• Fundacio Doctor Robert, Spain
• EURORDIS Rare Diseases Europe
• Ecsite - European Collaborative for Science, Industry & Technology
• The University of Dublin, Trinity College - Centre for Global Health
• Dutch Steering Committee on Orphan Drugs and Rare Diseases
• MPA - Medicinal Products Agency, Sweden 

Polka is a EURORDIS project over three years (September 2008-September 2011) supported by the European Commission and a Donors Committee composed of three pharmaceutical companies CSL Behring, Novartis and Sigma Tau Pharmaceuticals

Authors: Paloma Tejada & Anna Kole
Photo credits: © EURORDIS