The Knowledgeable Patients – conference in Copenhagen, November 26th 2007

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.

Contact: Conference Organizer Bjørn Bjørvik
Tel: +47 7764 6854

Web: National Research Center in Complementary and Alternative Medicine

EU-wide CAM evaluation project

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:

  • klaus.vonammon (at) kikom.unibe.ch or
  • florence.marian (at) kikom.unibe.ch

CAM in EU Health Programme

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 Programme”.

The final voting will be at the plenary session of the European Parliament in Strasbourg on July 11th.

Read the entire document here.

Researchers planning collaborative research projects

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 Ganzheitsmedizin”, and their comment on the EU Parliaments decision can be read here:

http://www.euricam.net/images/DECISION_No1982_br.doc

Videnskabens ulidelige træghed

Videnskab er en underlig fisk. På den ene side mener vi at leve i et oplyst samfund, hvor forskerne leverer os sandheden om, hvordan verden er skruet sammen. På den anden side ved vi godt, at sådan var det også for 50, 500 og 5.000 år siden – selv om de videnskabelige autoriteter dengang mente noget helt andet. Og vi lever jo stadig på den samme planet.

I dag erklærer flere og flere højt uddannede videnskabsmænd sig uenige med nutidens autoriteter og påpeger, at naturvidenskaben er utilstrækkelig, hvis vi skal udforske og forstå livet i alle dets aspekter.

Men i offentligheden tegnes der kun et billede af, at nogle mennesker tror på telepati, auraer eller healing og hævder, at der er mere mellem himmel og jord. Og autoriteterne affejer det skråsikkert med ord som pseudovidenskab, overtro og kvaksalveri, mens de arkiverer det i en skuffe med etiketten ”tro kontra viden(skab)”.

Den mest tydelige konflikt finder i disse Ã¥r sted mellem lægevidenskaben og de mennesker, der ved noget om KAM (alternativ behandling) – incl. en lang række læger og forskere. Konflikten findes i hele den vestlige verden, og alle steder udfordres lægerne af kolleger, der argumenterer for et andet verdensbillede end det naturvidenskabelige.

I Danmark er denne debat imidlertid stadig på puppestadiet, og den foregår kun i ringe omfang inden for den videnskablige verden. Diskussionerne føres mellem på den ene side lægerne i det etablerede sundhedsvæsen – og på den anden side en lille skare læger, forskere og lægfolk uden magt og status. Trods oprettelsen af Videns- og Forskningscenter for Alternativ Behandling i 2000 står fronterne næsten de samme steder, når det gælder opfattelsen af forskning og videnskab.

Konsekvenserne er videnskabelig tomgang, samt mere alvorligt: at den danske befolkning og det danske sundhedsvæsen må leve videre med en hurtigt voksende alternativ sundhedssektor, som pr definition ikke kan udvikles og kvalitetssikres på et forsvarligt videnskabeligt grundlag. Den enkelte bruger af KAM må fortsat krydse sig vej mellem tvivlende læger, usikre behandlingstilbud samt de kroniske lommesmerter, der kommer af at betale dobbelt: Skattekronerne til lægen og kontanterne til den alternative behandler.

Der er flere årsager til, at debatten ikke er særlig frugtbar. Magtfordelingen er skæv, idet kun de færreste inden for sundhedsvæsenet tør tage diskussionerne op på deres institut eller sygehus. Man diskuterer derfor kun disse emner i andre fora, der har lavstatus blandt fagfolk (og medier) og derfor har debatterne ikke status som egentlige videnskabelige diskussioner på linie med de diskussioner, der føres inden for de (læge)videnskabelige selskaber og i det offentlige sundhedsvæsen.

Desuden ender diskussionerne altid ved det samme magiske mantra: Det dobbeltblindede lodtrækningsforsøg eller den randomiserede kliniske undersøgelse. Det siges at være synonymt med selve lægevidenskabens og naturvidenskabens grundlag, og derfor går debatten om forskning i alternativ behandling hver gang i selvsving. Her skilles vandene, og man når aldrig frem til at diskutere de teorier, forsøg og erfaringer, som peger på andre paradigmer og sundhedsopfattelser end naturvidenskabens.

Det skyldes ikke mindst, at vi i Danmark mangler traditioner og ressourcer, der kan bringe diskussionen op i næste gear. Der, hvor vi kommer til at tale om selve videnskaben, om sundhedsvidenskabens præmisser, og om hvad det stigende antal grimme ællinger inden for videnskaben betyder for vores verdensopfattelse.

For at komme ud af dødvandet, må vi altså skifte gear. Derfor skal der bl.a. arrangeres en række seminarer og konferencer, der med en fordomsfri videnskabelig tilgang sætter fokus på krydsfeltet mellem den almen anerkendte naturvidenskab og de ”nye” erfaringer og teorier.

Og det kommer vi til at høre meget mere om her på Galilei.dk i det næste års tid!

CAM out – CAM in!

The Seventh Framework Programme, FP7, is including CAM issues – but CAM is not included in the first two calls in 2007.

Monday, December 18th in Brussels, the President of the European Parliament, Josep Borrell and the Finnish Prime Minister, Matti Vanhanen signed the Framework Programme, and the Specific Programmes were adopted by the Council on December 19th.

The programme was entering into force on 1 January 2007. Theme no 1 in the work programme is health – including “scientifically tested complementary and alternative medicines”. But in the 1st and 2nd call of 2007 CAM topics are not included nor suitable.

Please check these links:
http://ec.europa.eu/research/fp7/home_en.html

The following link is so long it does not fit. Please cut and paste into your browser, dont forget to remove the two “return keys”!

http://www.europarl.europa.eu/news/expert/infopress_page/
008-1532-352-12-51-901-20061214IPR01531-18-12-2006
-2006-false/default_en.htm

A group of European CAM-researchers joining the Euricam initiative are planning to launch research projects within FP7. This was decided at the Euricam meeting in Vienna, Nov. 20th 2006.

Due to the conditions in the first two calls in FP7, the researchers propose to submit a postgraduate education program, as a Marie Curie action

More information may be available at Euricam after the next meeting in Vienna, Jan 19th, or from Akademie für Ganzheitsmedizin, office@gamed.or.at

International congress in May

The International Congress on Complementary Medicine Research will take place May 11-13 2007 in München, Germany.
The congress is organized by Centre for Complementary Medicine Research, TU München, in cooperation with The International Society for Complementary Medicine Research, ISCMR.

Further information at www.cmr-muc2007.de

Note: Early Registration until March 1, 2007 (pay less!)

CCESCAM research projects

Centre for Cross-disciplinary Evaluation Studies in Complementary and Alternative Medicine (read more at www.galilei.dk/?page_id=16)

Dansk introduktion til CCESCAM

The research projects:

1. CCESCAM – background and funding
CAM use in Europe and the US, brief overview
Research focus and methodologies

2.1 Aarhus-team, under supervision of Robert Zachariae
2.1.1 CAM and Quality of Life (QoL)
2.1.2 CAM and mechanisms – experimentally induced myalgia
Project 2.1.2 is a post-doc-study conducted by Lene Vase under the supervision of Robert Zachariae and Anders Bonde Jensen.
2.1.3 The effect of acupuncture on palliative care
2.2 Odense-team, under supervision of Anette Damkier
2.2.1 Use and effect of CAM in cancer patients
2.2.2 Complementary medicine for cancer in Italy, India and Denmark – a comparative study of relations between agency, experience and socio-cultural structures of health care.
2.2.3 Implications of therapeutic emplotment in conventional and in complementary and alternative medicine (CAM) for cancer patients’ illness narratives and experience of quality of life.
2.3 Analysis of the supply of complementary and alternative medical treatments (CAM)
2.4 CCESCAM-VID: Knowledge-sharing, -representation and -conceptualisation in an interdisciplinary environment.

Participants

About CCESCAM

Project specification (pdf)

Forskning på tværs af grænserne

Et samarbejde mellem europæiske forskere forsøger at sætte gang i internationale forskningsprojekter for EU-midler. Initiativet hedder ”Euricam”, og en gruppe østrigske forskere er primus motor i arbejdet.

PÃ¥ et møde i Wien 20. november 2006 besluttede man at nedsætte en arbejdsgruppe, der skal stÃ¥ for det konkrete arbejde. EU har et sÃ¥kaldt rammeprogram for forskning, “FP7”, der løber fra 2007–2013, og det er her, man vil forsøge at hente pengene til KAM-forskning pÃ¥ tværs af grænserne.

Men det er en lang og besværlig vej at gå, og dels er FP7’s budget allerede kraftigt beskåret, dels er meningerne om relevansen af KAM-forskning som sædvanlig delte i de politiske og videnskabelige organer, der træffer beslutningerne. Indtil videre er ingen danske forskere involveret.

Man finder Euricam her, men forvent ikke en masse information, for også på det kommunikationsfaglige område er der tale om en pionérfase.