The Knowledgeable Patients
RESF conference, Copenhagen, 26th November 2007
“The Exceptional Case History Registry†at the National Research Center in Complementary and Alternative Medicine (NAFKAM), University of Tromsø, Norway is organizing its second Scandinavian conference on exceptional disease courses after the use of complementary and alternative medicine.
We are facing a new generation of knowledgeable patients and users whom those working within public health service and alternative treatment providers must listen to and relate to regarding development of their work. NAFKAM has chosen to collaborate with patient associations and alternative treatment providers’ organizations in Scandinavia about the registration of exceptional case histories.
The purpose of the registry is to establish a data foundation for research which can
contribute to the generation of knowledge about the factors influencing the development of exceptional disease courses after the use of alternative treatment. We carry out a thorough medical evaluation of the case histories that patients send to NAFKAM. At the same time, NAFKAM is interested in collecting information about the experiences and the knowledge held by persons who themselves define their courses of illness as exceptional.
Health personnel and alternative treatment providers need the knowledgeable patients. The conference is based on knowledge collected by NAFKAM from patients, medical doctors, treatment providers, and researchers about exceptional disease courses in Scandinavia. NAFKAM’s exceptional case history registry is the first one of its kind. The registry can be seen as an important window to patient based knowledge about disease and treatment courses. This knowledge can be used by doctors, nurses, other health practitioners, and alternative treatment providers in their daily, clinical work with patients.
At this conference results from the registration work, medical evaluation, and research projects based on the registry will be presented. The target group is patient associations, medical doctors, nurses, alternative treatment providers’ organizations, researchers, research institutions, politicians and journalists.
European research co-operation is encouraged by Swiss researchers at KIKOM, Institute of Complementary Medicine, University of Bern. At the ISCMR congress in May, they presented CAMbrella, an idea for a proposition for an EU-wide CAM evaluation project: Assessment of complementary and alternative medicine and ethical framework.
The focus will be on ethical, epidemiological and economic data concerning (CAM) therapies most applied in Europe. The research should include:
– philosophy, structure, process, outcome and costs in GP
– cross sectional and observational studies
– comparison with conventional practices
Partners can be:
– University and intersectorial (non-academic) resarchers
– CAM and non-CAM partners with a large experience in research and a corresponding list of publications
– small and medium enterprises (SME, GP or therapist practices)
If you are interested to participate in a CAMbrella task force, please send a detailed e-mail with your expertise, capability and resources to:
In a recommendation from the EU Committee on the Environment Public Health and Food Safety, CAM is mentioned clearly.
In “Draft recommendation for second reading†it says:
“A holistic and pluralist approach to public health is necessary and therefore complementary and alternative medicine should be included in the actions supported by the Programmeâ€.
The final voting will be at the plenary session of the European Parliament in Strasbourg on July 11th.
January 19th 10 researchers from 5 countries met in Vienna in order to prepare projects for the EU Seventh Framework Programme, FP7. The meeting was successful and two concrete research ideas was launched. The researchers are now continuing the preparations in smaller workgroups.
The meeting was hosted by “Akademie für Ganzheitsmedizinâ€, and their comment on the EU Parliaments decision can be read here:
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