Hi All,
If it is due to a lack of funding that limits your ability to really set up patient involvement projects, here might be the solution! The Canadian Health Services Research Foundation will fund up to 6 projects that involve patients in health care planning etc. Unfortunately I think you have to be a Canadian Permanent resident to apply... Deadline is May 27th, and the project will run from Oct 2010 to Oct 2012.
The funding initiative is called "Patient Engagement Projects Initiative", copy and paste the link below for all the info:
http://www.chsrf.ca/funding_opportunities/PEPInitiative_Projects_e.php

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The Cochrane Consumers Network (CCNet) had an extensive discussion on their mailinglist about the requirements, training, expectations and roles of consumers in the network. Many CCNet members contributed to this discussion over a period of six weeks. Janet Wale prepared a summary of this discussion, included at the bottom of the "resources" page:
http://ginppi.wetpaint.com/page/Links+and+Resources

Because of word limit here, i selected a few interesting comments under different headings.. Please see the .pdf file at the page above for the complete summary.

Requirements for consumers:
Formal education?
- Health literacy, keenness to learn, ability to articulate: As a layperson I have trawled the web over several years & have read, learning all the time. One does not require a degree to be knowledgeable, articulate
- Be educated to your rights and know your capabilities. Patients depend on truth & transparency.

Must have personal experience of the illness, or not?
- Consumers can comment and help to improve the review even if they have not experienced the problem themselves.
- If that were a requirement, it would be impossible to find consumers to look at every review
- I'm a great believer in the healing power of stories, including to convey information, but I don't think they ought to play a role in the actual Cochrane reviews

Training, in what?
-To respect actual evidence, and have a critical attitude toward medical expertise
Essential, or not?
- Training will help, but from my experience it would be better to help people to build, improve and be convinced of the capabilities they have, and a thinking mind
- Wouldn't it be great if public education around the world offered adequate training in evidence-based health care and how to evaluate the science

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Active patient participation in guideline development is an emerging phenomenon. However, patient participation in guideline development is methodologically still in an early stage of development. Several initiatives are undertaken, but systematic reflections and scientific publications on this topic are limited. To gain more insight in methods and conditions that enhance the effectiveness of patient participation, an exploratory study was conducted on the current practice of patient participation in guideline development particularly in the Netherlands. A literature study took place and semi-structured interviews (n = 46) were conducted among patient representatives, specialists and other parties involved in guideline development. They were identified by studying guideline reports and through the snowball method. The results show that in the Netherlands, patient participation currently takes place in most multidisciplinary guideline development trajectories. The methods mostly used are the inclusion of a patient (representative) in guideline development committees, and consultation of patients through focus groups and/or questionnaires. The results indicate that effectiveness of current initiatives, amongst others, seems to depend on characteristics related to the disease, the level of professionalism of the patient organization, and the attitude of involved professionals. Many conditions have to be fulfilled particularly if patients are to effectively participate in guideline development committees. Among respondents there was no consensus on the most effective form of patient participation in guideline development. It is generally recommended to include patients from the initial phase of guideline development; formulating the key questions is often considered to be the most important stage of involvement. Various recommendations are made; largely based on the Dutch situation. For more information: ppt GIN conference Lissabon

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This discussion aims at exploring what people expect from patient representatives and what caracteristics would make them more 'representative'.

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