Cost is a barrier to patient involvementBMJ 2016; 355 doi: https://doi.org/10.1136/bmj.i5453 (Published 11 October 2016) Cite this as: BMJ 2016;355:i5453
Many thanks for your Editor’s Choice, published on my 85th birthday.1 Patient participation in medical research has improved since I was invited to be the first patient representative on The BMJ editorial board, after complaining about the flawed study of women with breast cancer attending the Bristol Cancer Help Centre.2 I was one of those women, and we conducted quite a campaign, made a television programme, and wrote a book.3
I have attended many medical conferences and spoken at some. The main deterrent is cost. Even the Cochrane Collaboration, which is keen on consumer participation, has a complicated system for applying for funding to attend conferences, and if you miss the deadline you must fund yourself. Getting time off work can be another obstacle, and people may have caring responsibilities. I now live in Edinburgh, and most conferences take place in London or other parts of the world, so expense is an issue.
Some organisations are increasingly focused on the patient’s viewpoint—a shining example is Pink Ribbon, which held a conference in September at the Royal Society of Medicine on a neglected subject, “Breast cancer in the young, the pregnant, and with family history.” The first day was mainly for professionals and the second for patients, but the two interacted, and patients spoke on both days. One striking finding was that the GP referral guidelines (those of NICE4 and the corresponding Scottish ones) were out of date, as was illustrated poignantly by the testimonies of women diagnosed with breast cancer under the age of 30.
I praise the work of The BMJ’s patient panel and encourage you to do even better in future.
Competing interests: None declared.
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