Many thanks indeed for your article by Grant Lewison et al.1 and for your editorial.2 The idea that life with advanced cancer can be prolonged at huge cost, not only financial but also in quality of life, has always seemed pointless to me, as a cancer patient myself.
Grant Lewison et al. make the point that adverse events are rarely mentioned. This is still a problem even with first-line treatment, in spite of the good work done by the Cochrane Adverse Events Methods Group. The recent Cochrane Collaboration Colloquium (‘Patients Included') in Edinburgh did offer a workshop on adverse events, to which I contributed, as a Cochrane ‘consumer'. But we still have a long way to go before we have balanced and truthful reporting on drugs. I should like to suggest that no clinical trials should be published in medical journals unless the authors can show that patients have been members of the Trial Steering Committee, and consulted in the drafting of the report, and also that they give a full account of adverse events. ‘First do no harm' should apply to researchers as well as clinicians.
It is also worth pointing out that patients are not just patients: they may have relevant skills. For instance, they may be mathematicians, and know more about statistics than most doctors; they may be editors, and capable of improving reports of trials. They can also comment on consent forms, and give insights into how it feels like to receive the intervention in question. They will not normally expect payment, except any necessary reimbursement of expenses.
I suggest too that there should be two ‘consumers' on medical research committees: one person alone cannot do justice to the task; one needs a ‘buddy'. I had the pleasure of serving on a stroke trial steering committee (my husband had a stroke in 2007), but it would have been good to have a companion. The trial (IST-3) notes on its website: ‘We have a consumer on our Steering Committee who advises us on aspects of the study which are important to the participants and their families.'
I believe that some universities now make research grants conditional on whether or not consumers are involved: this seems to me to be a good move. The RSM itself looked at the subject of ‘Learning together: Engaging and involving patients and the public in medical education’ in a meeting on 26 November 2018, in which I had the pleasure of taking part.
Declarations
Competing Interests
None declared.
References
- 1.Lewison G, et al. UK newspaper reporting of the NHS cancer drugs fund, 2010 to 2015: a retrospective media analysis. J R Soc Med 2018; 111: 366–373. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Abbasi K. The seductive hope of cancer therapies. J R Soc Med 2018; 111: 343–343. [DOI] [PMC free article] [PubMed] [Google Scholar]