STAKEHOLDER WORKSHOP Do we really know how to curve down asthma in Europe: Lessons from national programmes”? “What about the patient?” Martine Puhl Patient Advisory Group Tuesday 15 th September 2015, European Parliament, Brussels

New chances for people with asthma? Focus of the patient: Overall. Not just 1 element. Blog of Phil Taverner & Alison Long PAG EARIP One of the perspectives that patients can bring to the partnership is the fact that we aren't just hosts or repositories of this or that disease, we're just people trying to make our way through life as best we can. Scene setting impact of Asthma patients and EARIP Here's a thought for starters. There are 30 million people in Europe with asthma, and those are just the ones with a diagnosis. If we were a country, we'd be the seventh biggest country in the EU and number 10 in the whole continent of Europe. That could add up to a lot of influence. Asthma doesn't often get the kind of press coverage that some other health problems manage, but it is a serious disease and, unlike many other diseases, is actually becoming more common. It's actually the most common long-term condition in children. it will address some of the biggest risk factors for asthma at European level, including tobacco smoke and air pollution (both indoors and outside). Some of these can only be addressed at European level; air pollution, for example, doesn't stop at the borders between countries. It will also enable health professionals to share best practice about how to provide the best possible care for people with asthma, giving them control over their own lives by enabling them to manage their condition most effectively.

Introducing Martine Puhl

Why do patient representatives want to join? 1.To improve Contribute to make the diagnose, treatment better or input for prevention of the illness 2.To learn More insight in their illness and backgrounds 3. To engage Contribute to a overall vision about Asthma. Care – living – work – school – mobility – income- equality

Why must patient representatives join?

What do patient representatives need? Support (patient organisation/ co-patient experts) Training Budget for expenses (travel) Leading role for a patient organisation in intermediaire position (costs money) So patient representatives can be: Able to be active Allowed to be active Enthousiastic to be active

What are successful points for collaboration with patients?  Surprise effect  More social value  Explicate the research design and projects Correct interpretations and conclusions from the patients point of view  More patients involved in the project

Caught up in the project Different opinions Daily routine (business as usual) Different expectations Dissemination in broader perspective What are the obstacles?

Tips and challenges View patients as experts Be in line with the patients Learn by doing it Develop and do it together THEME 1: THEME 2: THEME 3: THEME 4: