1. The Swedish Heart and Lung Association is a Non Governmental Organisation that unites people with heart and lung diseases. (approx. 43 000 members) It is politically and religiously independent association; founded in 1939 and has been governed by its members ever since The most important objective is to improve living conditions for people with heart and lung diseases Hjärt- och Lungsjukas Riksförbund

2. Well-being Improve day-to-day life for people suffering from heart and lung diseases Treatment/Rehabilitation Work for access to best possible treatment and rehabilitation. Supporting research. Consideration Caring about people; sharing knowledge and stimulating excersise among its members aiming to increase well-being and thereby reduce the amount of people with heart and lung diseases Solidarity To influence local and governmental politicians to reach equal rights and opportunities for everyone suffering from heart and lung disease The aim of The Swedish Heart and Lung Association is to improve the well-being, treatment, rehabilitation, social security and living conditions of all people suffering from heart and lung diseases and to give support to their relatives.

3. Our activity programme It consists of six parts Exercise Conversation groups Study circles on diet Handling stress Lectures Smoking cessation To create public opinion In particular on issues concerning its members and to support the association’s objectives To create security support and fellowship to all members Three target areas

4. Patient participation in research A collaboration between The Swedish Rheumatism Association Swedish Asthma and Allergy Association The Swedish Heart and Lung Association Swedish Psoriasis Association

5. Four Associations – one project Collaboration between researchers and patients gives positive effects Educating patients to become research partners Patients affected by research can contribute to research projects A joint three year project 50 educated partners Focusing on rehabilitation and medical research

6. What is a Research Partner? A patient with a certain diagnosis Has taken part in a education programme Can take part in various research projects Represent other people with the same diagnosis

7. Educated patients ”research partners ” –The role as a research partner –Research ethics –Psychology Well informed elected representatives –Support group –Greater understanding Patient participation in research

8. Who is a Research Partner? Allan Larsson Member of The Swedish Heart and Lung Association How do you think your role as a research partner could be useful for a research project? Perhaps above all by being able to give views on patient information, opinions on ethical issues, research protocols. Is there a special direction of research that you are especially curious about? Psycho-social issues related to heart and lung diseases: What happens to a person who had suffered a heart attack? What happens with relationships, social life, work? What impact does this knowledge have on rehabilitation?

9. The Researcher Change in attitudes New understanding of patient aspects Better opportunities to inform on results Knowledge based on research results affects patient organisations Why do you feel that participation in various research projects is important? It feels very natural that those affected have both insight and influence in research. The form it takes is of course determined by the nature of the research and the type of patient participation needs to be tailored to different requirements. What is required for a collaboration to work? Mutual respect is a key factor I think. It is necessary to recognise the unique skills that patients have and make sure that it will benefit research in the best way.

10. How to become a research partner Recruting process Motivation and interest Active in their patient association Easy to communicate & good knowledge in English Living with a cronic disease

11. Websites www.forskningspartner.se www.hjart-lung.se