I joined The Cochrane Collaboration in 1997, when the Pregnancy and Childbirth Group (PCG) invited me to help them involve consumers in their work. At the time, I was an antenatal teacher with the UK National Childbirth Trust (NCT) and I was on the NCT Research and Information Group because I had a scientific background. I was interested in PCG because Iain Chalmers had made a distinct impression on me when he spoke at an NCT conference a few years earlier. He presented a systematic review on a new suture material showing more painful intercourse three months after birth, yet this material was still being used. I was incensed and we began a campaign in NCT to try to change this. Iain also invited NCT to comment on his book ‘Effective Care in Pregnancy and Childbirth’ (OUP 1989), which was the pre-runner to The Cochrane Library and included 600 systematic reviews in pregnancy and childbirth with excellent introductory information in each chapter. I was very impressed, and so was keen to become involved. I found PCG a very friendly group and today I still enjoy working with them immensely.
In 1997, I was encouraged to stand as a consumer representative on the Collaboration Steering Group (CCSG). I thought this would be very interesting and that I could contribute to the wider Collaboration and the involvement of consumers. It was the early days of consumers’ involvement in research, and it was a new concept to many people, including many people in Cochrane. So it was exciting times. The CCSG work was very rewarding as this was another group of dedicated people who treated me as an equal. We worked hard to put the Collaboration onto a sound footing. I recall our target was to sell enough copies of The Cochrane Library to secure Jini’s post (as the only member of the secretariat) when the European Union funding finished – we succeeded, but how times have changed now! Chris Silagy was chairman when I joined the CCSG and then Andy Oxman took over. It was very stimulating work, we set up a monitoring process so that the entities would be accountable to the CCSG, and we also developed a strategic plan for the Collaboration.
In these early days, I found it hard involving PCG consumers and selling the idea of The Cochrane Library because there were so few reviews published, but gradually this changed. The Synopses (now Plain Language Summaries) were introduced as an integral part of the review and this became a tool for dissemination of information to the public. In 2000, the PCG allocated funding to support my work as Consumer Panel Coordinator (3 days a week) and this made a major difference to what I did and achieved. This enabled every PCG protocol, review and update to have consumer comments, and for consumers to contribute as often as they wished and I collated and summarised their comments . I had two wonderful helpers in Dell Horey (Australia) and Carol Sakala (USA). We built up the PCG International Consumer Panel to 72 consumers, many of whom became experienced referees. Sadly, this funding ceased in 2007, and so the current system of consumer input is less inclusive and it is harder to bring in new consumers and to support them in the way we used to.
I am now Consumer Editor with PCG, a volunteer role where I am trying to develop ways of involving consumers which are more self supporting and sustainable without funding - quite a challenge in such a busy group. The new face of CCNet (with a paid coordinator post and a volunteer executive) and the work of the Cochrane Editorial Board, is going to make a huge difference I feel sure. I am also now co chair of CCNet Executive, so there are still exciting times ahead, with lots of work to keep us busy.
Gill Gyte was an antenatal teacher with the UK National Childbirth Trust from 1985 to 2010 and still works with NCT as a Research Networker. She has three sons, all young men now. Gill was the Consumer Panel Coordinator for the Cochrane Pregnancy and Childbirth Group (PCG) from 1997-2007, and is now Consumer Editor for that group. She has been with Cochrane Consumer Network since 1997, and was on the Collaboration Steering Group from 1997-2000. She also represents women’s views on a number of research projects in maternity care and has been on three clinical guideline development groups.
Posted as part of the Consumer Network’s focus on Wise Consumer Month.
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