Development of GUIDELINES RHEUMATOID ARTHRITIS
“how to participate and contribute as a patient partner” Marieke Scholte-Voshaar The Netherlands
APOM 2007
What are guidelines?
Guidelines are systematic developed recommendations, meant to help clients and professionals to make decisions about desirable care concerning concrete health problems
APOM 2007
Why do we need guidelines?
• Aiming at improvement of care • Evidence based, therefore most actual status of science for diagnosis.
APOM 2007
Indicating, not binding!
APOM 2007
Complexity developing guidelines
• Who is the owner? • Who is responsible for updating? • Complex because of multi disciplinary communication • Conflict of interests • Difficulties with implementing
APOM 2007
Wishes and Expectations of Clients
•Clients want to participate •More attention for participation in society (egWork) •Multi disciplinary guidelines •Organization by independent institute •No insurances involved •Mandate for every participant (by their own party) •A qualified chairman is priority
APOM 2007
Wishes and Expectations of Clients
• Clients need to be informed • Evidence based, but also possibility for integrating experiences and practice by knowledge (clients) • Same facilities for patient organisations as for other participants • Clients want the right to authorize the guidelines (as well)
APOM 2007
Wishes and Expectations of Clients
• The ownership should be for the professionals • The best treatment is written down • Clients wish to be involved at bringing the guidelines up to date
APOM 2007
Implementation
• Need for a special, seperate version • PR campaign can be organised by clients • Finance will be necessary
APOM 2007
Checklist patient organisations
• Who will be our representative(s) and who will be the substitute (s)? • Do we have (professional) support? • Do we have enough back-up? • Are we aware of our own knowledge? • Can we prioritise? • How do we deal with concepts?
APOM 2007
Checklist patient organisations (continued)
• Do we know what is important for our members? • Can we participate in literature research? • Do we contribute one time or is our involvement more frequently needed? • What are our responsibilities? • Who (else) will be invited? • Will consequences be drawn by insurance companies?
APOM 2007
My own experience
“My experience with this project has learned me once again that best results will be reached by cooperation between professionals and clients.
APOM 2007
Thank you for joining my presentation! Marieke Scholte-Voshaar • Dutch Board Bone and Joint Decade • Member of Committee CQ Index • Member of Committee External Indicators • Member of Committee Dutch Guidelines RA • Chairman staf Editorial “In Beweging” Magazine • Member Disease Impact Score (Eular) • Member Medical Protocol Insurance Physicians • Eular speech 2006 “Fatigue” • National Media (tv) medical programs • (co) Founder of www.tools2use.org
APOM 2007