Our commitment is to patient partnershipBMJ 2017; 356 doi: https://doi.org/10.1136/bmj.j939 (Published 23 February 2017) Cite this as: BMJ 2017;356:j939
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I was delighted to see this commitment to continue with an emphasis on patient involvement is strong (http://blogs.bmj.com/bmj/2017/02/15/paul-buchanan-on-rosamund-snow). But with the ongoing help of our patient panel we are more determined than ever to continue our advocacy for patient partnership in healthcare.
Evidence that leads to changes practice is rarer than we might hope.
As Dr Godlee points out in her editorial, to quote:
When we ask authors to tell us how patients were involved in their research, the answer is almost always not at all.
In short, this can be interpreted as “patients do not matter, they should do as they are told by us experts.” As a patient and member of a profession qualified to treat many mammal species, I believe that I have a contribution to make along with other knowledgeable patients of which there are many. Furthermore as a retired researcher, I am conversant with scientific papers and literature searching.
Over the years of reading medical papers (I am a BMJ patient reviewer) as well as of my own conditions, and checking references, it seems to me that research that is contrary to the current chapter of the medical Gospel (ie the Directives issued as “guidelines”) is invariably ignored however relevant it is. Also there appears to be a practice of inflating the benefits of treatment by using statistical techniques such as ORs, HRs and relative rates. While I have no quarrel with use of these techniques to establish the statistical significance, I believe that not only should the probability of benefit to the individual patient being published but its complement, the probability of NO BENEFIT should also be published rather than the rather confusing NNT. There are examples of relative rates being presented and taken up by the media where the true effect is grossly exaggerated. In one case the real increased incidence was 1 in 7000 from 1 in 7000 which was reported as a 100% increase, The consequences of this were appalling (Gigerenzer, Gerd. Risk Savvy: How To Make Good Decisions (p. 6) “That is, the absolute risk increase was only one in seven thousand, whereas the relative risk increase was indeed 100 percent”.)
Surely, apart from anything else, the ethics of such astroturfing and agnotology (http://www.bbc.com/future/story/20160105-the-man-who-studies-the-spread-...) are to be condemned and removed from medical advertising.
I am also reminded of the GSK Study 329 (https://study329.org/study-329-continuation-phase-september-21-2016/?utm...) and the Poldermann affair where 800,000 patients died as a consequence of using a recommended guideline practice. As the actual paper was rapidly taken down for “review” never to be seen again we will never know how this number was actually calculated. From the original paper on which this number was based, I calculated that this 800,000 was possible depending on what assumptions were made (Bouri S, et al. Heart 2014;100:456–464. doi:10.1136/heartjnl-2013-304262). However it also appeared that the true incidence was small and in the order of 1-2%. Then a search of US DoJ fines on major pharmaceutical companies is both revealing and frightening. Of course these “infringements” are settled out of court so that offenders are not actually convicted as under US law, conviction would remove the company from selling to Medicare and Medicaid.
Surely honesty should be central to the medical industry from Big Pharma through to the medical establishment. Currently, I and many others are unconvinced of this, particularly in the top management; profit, money and status appear to outweigh patient health and outcomes. The Starbridge report (Starbridge B JAMA, July 26, 2000—Vol 284, No. 4
http://www.ncbi.nlm.nih.gov/pubmed/?term=JAMA+2000+284%2C+4+483) and the missing URL leaves me wondering about the integrity of the medical establishment (http://www.heartstats.org/documents/download.asp?nodeib=6797 This URL no longer exists? WHY?
Now on https://renegadewellness.files.wordpress.com/2011/02/cholesterol-mortali...
On the other hand there are all those hard working GPs, junior(??) doctors, consultants and nursing staff working daily with patients with out which the NHS would collapse. I, for one, am very grateful to them.
Competing interests: No competing interests