Intended for healthcare professionals


Patients’ roles and rights in research

BMJ 2018; 362 doi: (Published 25 July 2018) Cite this as: BMJ 2018;362:k3193

Re: Patients' roles and rights in research

As the first patient representative on the BMJ Editorial Board I am delighted to see the progress made by PPI (Patient and Public Involvement) in research over the last 25 years. But as your editorial maintains, much still needs to be done. Whereas in many areas, academic research in universities usually now requires patient representation on trial committees, the pharmaceutical industry still has a long way to go. The inducements sometimes offered by drug companies in the form of funding of patient groups is unlikely to be wholly disinterested.

Unfortunately systematic reviews are still constrained by the parameters of the original research papers, which they draw together to reach some kind of collaborative consensus on the topic studied. One thing that particularly concerns me is the inconsistency of the original research papers in publishing data on adverse effects of treatments. If these are not reported in the original paper they will be lacking in the systematic review: and too often they are not.

One particular detail of the research on the breast cancer drug Tamoxifen continues to bother me: its possible effects on the singing voice are still not reported in the British National Formulary. While this might not be disastrous, even though distressing, for an amateur singer (such as myself), it would end the career of a professional singer. The effect of hormones on the voice has long been known: remember the castrati? The famous singer Kathleen Ferrier refused an oophorectomy because she 'regarded her voice as a divine gift and would go to the grave with the voice as it had been given her.'(1)

Also of course the researchers don't always get it right. It was only an extensive campaign on the part of patients that helped to set the record straight, after the disastrous research on the Bristol Cancer Help Centre (now Penny Brohn Cancer Care) was shown to be fatally flawed. (2)

I suggest that the remedy lies in the editorial policies of the medical journals that publish the original research. In my view papers should not be published unless a full account is given of adverse effects of treatments, and/or PROMS (Patient Reported Outcome Measures) whether of drugs or of medical devices. Only patients can help here, which is why their participation in research policy is so important, and why they should be fully supported, with expenses paid and meetings made as patient-friendly as possible. They often have much to contribute: patients might also be experts in relevant fields, for instance statistics, psychology, nutrition, and so on. We all need to work together. Congratulations to the BMJ for taking the lead, but much more still needs to be done.

Suggestions from patients for research topics might also be helpful. A particular concern of mine at present is the current controversy over the herbicide glyphosate, which is widely used all over the UK in farms, parks and gardens. Whether or not it causes cancer is hotly debated. It would surely be a relatively simple piece of research to use existing data to see whether people working in these areas have a higher incidence than average of certain cancers, particularly skin cancers. The Biobank might contribute. There will be many other topics where patients could suggest ideas.

Heather Goodare, Cochrane Consumer representative

1. Leonard, Maurice: Kathleen: The Life of Kathleen Ferrier, 1912-1953 (Futura 1989) p. 230.
2. Goodare, Heather (ed.) Fighting Spirit: the stories of women in the Bristol breast cancer survey, Foreword by Sheila Hancock OBE (Scarlet Press, London 1996)

Competing interests: No competing interests

18 August 2018
Heather M. Goodare
retired counsellor (and cancer survivor)
Cochrane Collaboration Consumer
3 Glengyle Terrace, Edinburghj EH3 9LL