What is patient participation in research?4 associations - 1 Project
Patient participation in research (Brukarmedverkan i forskningen) works to give those that are affected by research better opportunities of contributing to the research. A collaboration between researchers and patients often gives very positive effects both for researchers and patients. Two central parts in this work are to train so-called research partners and educate our elected representatives in the respective associations. Our aim is that trained patients, research partners, will be able to take part in various phases of the research process. The wishes and requirements of the individual researcher decide the role of the patient in the specific research project. We would like to develop the researchers’ form for dialogue and co-operation with patients. Patient participation in research is aimed chiefly at medical research, rehabilitation research and other research that affects the various member groups of the associations. What is a research partner?A research partner is a patient who has taken part in our training for research partners. A patient is an individual with a certain diagnosis. In this project it is the diagnoses rheumatism, asthma- and/or allergy problem, heart and lung illnesses or psoriasis that the patients represent. After the course the research partner can participate in different research projects. At the moment researchers have a certain exchange with patients in conjunction with the design and following up of research studies. We would like to develop this field through our research partners. No two research projects are completely alike. The research partner can participate in many different activities within one project. In some cases from start to finish, in other cases you might need to read other studies, participate in discussions about clinical needs or discuss ethical considerations. In other words the research partner will have an important role and represent many other people with the same diagnosis. Requirements for those wanting to be a research partnerThe project selects each research partner using a thorough recruitment process. Naturally there are certain requirements for the person that is interested in being a research partner. Amongst other things you need to be motivated and interested in the task, because it requires time and commitment. You ought to be active in your association and find it easy to communicate. A knowledge of English is necessary. The most important thing though is that you have the experience of living with a chronic illness. As a trained patient you represent a special knowledge that researchers do not have access to in other ways. For those carrying out research
For those carrying out research, a collaboration with our research partners can provide new perspectives from people that actually live with the disease. Through co-operation with our research partners you, the researcher, will obtain good opportunities to disseminate the results of your research in our associations. Our interest in research is large. If you are interested as a researcher in co-operating with one of our research partners please contact
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The Swedish Rheumatism Association, the Swedish Asthma and Allergy Association, the Swedish Heart and Lung Association and the Swedish Psoriasis Association believe that research is an important matter. We are four associations that together would like to find models for patient participation and influence in research. Together our members form a large unutilised resource. They know what it is like to live with different illnesses. 
In the future, research will work with patient participation and influence to an ever increasing extent. The requirements of applications for research funding research grants will increasingly contain these elements. 
Caroline Åkerhielm
Marie-Louise Luther
Pelle Johansson
Birgitta Rehnby