For the meeting, NAFKAM invited experts in the field of patient involvement, such as dr Rohini Terry and Nina Adolfsen (from the Norwegian Cancer Society) to meet and discuss with NAFKAMs staff, how to ensure involvement and commitment from patients in all parts of NAFKAM's work:
- User participation is a strategic goal for us, but also a basic requirement and criteria in an increasing number of calls for research funding, says prof. Miek Jong, who is head of NAFKAM.
Increasing the quality of research
-"No research on us, without us", sounds is a widely used motto among European patient organisations, according to dr Rohini Terry. She was brought in to share her experiences with patient and public involvement (PPI) from the UK, and also highlighted the differences between qualitative research - where researchers get answers to their research questions, often from patients and the public - and PPI - where patients and the public are involved in developing the research questions and how they can best be answered.
Public information about CAM
- Questions such as "what can the research tell us about effectiveness and safety" have been the fundamental for public consumer information about CAM to answer, says Ola Lillenes, who is head of NAFKAM s information department. -This was also what large patients- and professionals' associations recommended when NAFKAM started planning the national information service in 2005, he continues.
Says Lillenes: -Initially, all information work is based on recognizing your audience, its needs and preferences, and it is a prerequisite for good user participation that information is adapted to those it is intended for. However, we must take the surroundings into account: In the field of CAM, we do not exist in a vacuum as the only information source. We must also consider that the audiences' needs change. Today - nearly twenty years down the line - we know that half of our audience is more interested in finding answers rooted in a specific health problem or outcome, than in specific therapies. More people want to know about "other patients' experiences", and if "there's anything I should be extra careful about".
Special points for PPI regarding CAM
The concepts of participation, involvement and influence can be seen as extra important in research into CAM, because usage is largely self-selected and financed by the users themselves:
- This makes it extra important to involve the user at all stages, so that the investment in objective research and public consumer information on this topic can become as relevant as possible for those who use or are considering using CAM, concludes Miek Jong
