Capacity building patient organisations

At People Dialogue and Change we have been doing an increasing amount of work to support Patient Representative organisation to train and support a generation of young patient activists. As well as our long standing work with the European Patient Forum, where we we have been supporting the Summer Training for Young Patient Advocates programme for over three years, PDC has recently begun supporting the International Bureau for Epilepsy and the European Platform on Multiple Sclerosis. We have been working with all of these organisation to develop the leadership and advocacy skills of the young people in their ranks, and ensure that young people can be fully part of the patient advocacy movement.

It is now widely established that young people are less engaged with formal representative structures than in previous generations. Some in the youth sector have responded by re-focusing projects on so called alternative forms of participation such as social movements or deliberative democracy.  However, our work with the patient representative community highlights that alongside this there is still need for a continuous focus on involving young people in representative civil society structures. For people, with long term health conditions these structures provide a vital way of promoting and advocating for patients rights, and raising awareness of specific issues affecting communities of people that are relatively small and spread out. 

No photo description available.

Outputs from a workshop run by our new associates Evaldas Rupkus for the International Bureau for Epilepsy to develop their young advocates communications skills.

All the things we have been doing in one post.....

Life at PDC has been getting busier and busier, so much so that we never seem to have time to update our website posts....anywhere here's just a taster of the things we have been involved in recently.

  • Our director Dan Moxon has recently led a review of NSPCC's approach to youth participation on behalf of the National Youth Agency 
  • For a third year Ed and Dan are supporting the European Patient Forum delivering their Summer Training for Young Patient Advocates.  This combines a mixture of online and offline learning and gamification techniques to enable young patients to be leaders in the patient community.
  • We are working with UK Youth to help develop The British Councils approach to youth participation within their  internationalism ambition for UK Young People
  • Through his role at UCLAN Centre for Children and Young People's Participation, Dan is supporting Preston Community Gateway Housing Association to run a piece of youth led research around housing in Preston 
  • We are developing a train the trainer package for Manchester City Council on youth engagement and participation.
  • Dan is working with researchers from the Pool of European Youth Researchers coordinated by the partnership between the European Union and the Council of Europe in the field of youth so help design the new youth dialogue process on behalf of the Romanian Presidency of the EU. 
A final we are very pleased to announce the publication of a new study which Dan co-authored with other members of Salto Participation and Informations Think Tank on Youth Participation on inclusive participation in the EU youth strategy. Read the the paper online or download it from here.

New does not always mean better

This month PDC’s Director Dan Moxon was invited to be an “inspirational speaker” at the Erasmus+ National Agencies annual European TCA meeting coordinated by Salto Training and Co-operation, on the topic of new and alternative forms of participation. (You can watch the full keynote in the video below)

The term “new and alternative” is rapidly becoming a  buzzword. After the publication of the European Commission's new youth strategy proposal which had the term featured all the way through it, we certainly noticed in increase in downloads of the research Dan and Anne Crowley conducted on the topic.
But as the research argued, new does not automatically mean better… simply Sometimes new ideas are an improvement on the old ones,  sometimes new ideas are worth testing but ultimately don’t offer improvements (Google Glasses anyone?). Sometimes it’s somewhere in between, and we can pull out the learning and move on to the next idea.

So whilst new forms of participation such as online approaches certainly offer a lot of potential for improving participation, it’s time we got serious about identifying and evaluating what we hope to achieve by adopting new methods. We need to move beyond abstract claims about how some forms are better or worse than others. Instead we should define what we are hoping to improve and evaluate both old and new methods alike, moving towards the more successful ones. This is how we can make sure we improve the opportunities young people have to influence and engage with the world around them, rather than simply just doing something different for the sake of it.

So instead of talking about new and alternative forms of participation let's start talking about 
  • New and more inclusive forms of participation,
  • New and more influential forms of participation,
  • New and larger scale forms of participation.