Considering the Colloquim

Report on Cochrane Colloquium
held in Lyon, France, Oct. 7-13, 2001

Ann Qualman, Former CMSG Consumer Group Coordinator (2001-2007)

My purpose in attending the Colloquium was to exchange knowledge and experience with other consumers, particularly on consumer roles and on the functioning of different consumer groups. This was very successful and I am grateful for being given the opportunity to attend.

1. I learned about consumer roles in meetings of the Cochrane Consumer Network (CCN) which included:

  • Presentations by consumers on their role in different Review Groups
  • Training (half-day) on how to referee a Cochrane systematic review (using an example and with the participation of a reviewer in the Acute Respiratory Infections Review Group)
  • Annual General Meeting of the Cochrane Consumer Network:
  • several consumers offered to work on Network governance issues
  • decision to re-develop Consumernet as a CCN consultative mechanism
  • interest in learning different ways to involve consumers and recruit them
  • problem of consumer in-accessibility to Cochrane library

Consumers also participated in plenary panels and workshops. I made a presentation on a Plenary session on Barriers to Use of Systematic Reviews and co-chaired a workshop on consumer participation.

2. Functioning of different consumer groups. Some Review Groups have at most one or two consumers. The Upper G.I. Group, for example, has a single but very active consumer who speaks to medical conferences. Of most relevance to CMSG are the Pregnancy and Childbirth Group, the Dementia Group (both UK-based) and MS Review Groups who involve a number of consumers and have consumer groups like ours.

The Pregnancy and Childbirth Review Group is, I believe, the oldest CC Review Group and has the largest number of consumer participants. Its Consumer Panel has involved over 50 consumers and consumer advocates in the past two years. The Consumer Coordinators (three: one each for Europe, North America and Australasia) contact Consumer Panel members and ask whether they would like to comment on a protocol or review.　 Each review has 1 – 7 consumers commenting. The comments are collected by the Principal Consumer Coordinator who collates and summarizes them and sends them to the review author and editor. Feedback is given to the consumers. (The process followed has been written up and published and could be discussed in greater detail at a future CMSG Consumer Meeting of all of our reviewers to see whether we might improve our own process.)

3. The Dementia Group The Dementia Group doesn’t publish protocols or reviews without consumer involvement. (A consumer is defined as anyone with personal experience in dealing with dementia.) The group is interested in the dilemma of whether consumers and peer reviewers should use the same or different guidelines. Reviewers, rather than the Editorial Group, take responsibility for incorporating consumer remarks. They cited one example, organized through the Alzheimer Society, whereby 4 consumers and 2 other reviewers met for one day to look at a review in detail. The review was revised 4 times until it met the consumer objections. The process of a full-day meeting was too time-consuming and too expensive (consumer travel was paid) to be repeated in every instance but it produced an excellent review.

4. The Multiple Sclerosis Review Group is fairly new. It has 12 active consumers, all in Italy. The Italian MS Society recruits, translates and publishes the results of reviews. They first wanted consumers to know each other so they held regular monthly meetings, face to face, for 6 months. Then they offered training about CC. The 12 consumers are divided into 4 groups :

  • Protocols and Systematic Reviews
  • Translators of papers (from English to Italian) for publication in the MS Journal
  • Searchers (must live close to the reviewers)
  • Consumer Coordinator (Silvana Silva) who replies to consumer questions

5. The Hematology Review Group (based in Germany) is forming a consumer group and the Review Group Coordinator was very interested in our experience; I spent an hour or more explaining to her how we function. The Chinese consumer representative and others were similarly interested in our experience and in our one-page consumer summaries.

6. Other Insights – The Colloquium provided many other valuable insights, such as:

  • consumer summaries can be sold as « How to find out if your doctor is up to date! »
  • the abstract is the most read part of the review but it is not included in our CMSG consumer checklist;
  • recognize that consumer summaries are used by clinicians and others as well;
  • differences in what consumers and policy makers look for in reviews;
  • value of a website which provides consumers with a seamless pathway of information on all aspects of their health issue: not just medical, but also information about transportation, welfare benefits, legal rights. Norway has such a website (in Norwegian) on back pain.
  • effective techniques exist for teaching medical students to use evidence-based approaches;
  • how to communicate research to clinicians (eg., by programming palm pilots for this purpose);
  • the advantages of (non-profit) insurance company funding of CC which avoids some of the pitfalls of drug company funding.

7. The Cochrane Colloquium is to be held in Canada in 2004. The Canadian Cochrane Centre has begun planning for this and there was discussion of preceding the Colloquium with Consumer Days, probably focusing on certain entities, which consumer groups internationally would be encouraged to attend.

8. My favourite quote from the Colloquium:
« If you’ve got the facts on your side, pound on the facts. If you haven’t got the facts, pound on the table. » (Tom Loftus)