Heather Goodare first became interested in medical research as a participant in the discredited 1990 study of women with breast cancer who attended the Bristol Cancer Help Centre for complementary care. She was the first patient representative on the Editorial Board of the BMJ, and has served Cochrane as a 'consumer' for many years, also contributing to medical journals and conferences. After a career in academic publishing she trained as a counsellor, and ran a cancer support group in Crawley for 13 years before moving to Edinburgh in 2003 to join family members.
How do patients get involved in medical research? First of all, in my own case, to try to set the record straight where they think it is faulty. When I was prescribed tamoxifen for breast cancer in 1987 no oestrogen receptor test was done: tamoxifen was given to everyone regardless. The main side effect that gave me grief was the loss of my singing voice, which went croaky and dropped an octave. I contacted the drug company concerned, thinking that they would be at least interested to know, but they tried to stop the news getting out, and in spite of my best efforts over the years, this particular side effect is still not listed in the British National Formulary.
My next encounter with medical research was as a participant in the notorious study of breast cancer patients attending the Bristol Cancer Help Centre for complementary care. I was recruited on my visit to Bristol in January 1987, and was told that it was to be a 5-year study, comparing women who visited Bristol with others who did not: all received orthodox therapy. Imagine our distress on learning from the national press in September 1990, when the Lancet published interim results after only two years’ research, that ‘women who go to Bristol die sooner’. We thought that the study was continuing, since we were still receiving annual questionnaires. What on earth had gone wrong?
In fact of course, a great deal had gone wrong. The study was seriously flawed, as many doctors and statisticians pointed out in letters to the Lancet. Some of us got together and formed a support group, wrote to the medical press, made a television programme, and compiled a book: Fighting Spirit: the stories of women in the Bristol breast cancer survey ed. Heather Goodare, with a foreword by Sheila Hancock (London, Scarlet Press 1996). At this point the British Medical Journal, which had initially taken the same line as the rest of the press, with its headline ‘Death from complementary medicine’, now became supportive, with an excellent review of Fighting Spirit, and an invitation to me from the Editor to join his new Editorial Board as its first lay member.
At this point I became very busy: speaking at conferences, writing articles, and also running a cancer support group and working as a counsellor. The new organization for consumers now renamed ‘Involve’ found there were many more people like me, anxious to help with key issues of medical ethics. The Cochrane Collaboration also was interested in ‘consumer’ feedback, and I became involved with them as a peer reviewer. So far it was all about cancer, mainly breast cancer, where I could use my personal knowledge and experience. But in 2003 I moved from West Sussex to Edinburgh, to join family members, and enjoyed a bit of time off for a change, until my husband had a stroke in 2007. Once again I became involved in medical research, this time in stroke medicine. Next month I shall be attending a meeting at which the results of a stroke trial will be announced: again I am the only ‘lay’ member of the trial steering committee.
So what of the future? I think that the Bristol study marked a turning point: patients can be helpful not just in designing patient information leaflets for clinical trials, but in designing the research itself. After all, only they know which ‘end points’ are really important.
Posted as part of the Consumer Network’s focus on Wise Consumer Month.
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