BMJ: Patient's roles and rights in research

Paul Wicks, Tessa Richards, Simon Denegri and Fiona Godlee:
Patient's roles and rights in research

Critical voices, including some patient advocates, have likened current approaches to patient involvement to “virtue signalling.”67 They point to an enterprise which remains skewed to serving the vested interests of professionals and industry—not patients.8 Some patients even independently fund and conduct their own research out of frustration with the system.9

...
Giving real power to patients and those who care for them will entail shaking up existing research hierarchies, not merely smoothing out a few bumps in current practice. Senior researchers should lead by example and embrace this essential culture change. Coproduction of research must go beyond a handful of enlightened practitioners responding only to the most vocal (and well funded) patient communities, to become the new global norm for clinical research.

To advance this move, the BMJ is extending its current requirement to report how patients and the public were included in the design, conduct, and reporting of clinical research studies across its portfolio of journals.21 In addition, from January 2019 onwards we will require authors of clinical research papers to provide details of how they intend to disseminate results to participants and relevant communities. We have also pledged to work with others to define and enshrine best methods for coproduction of research.

 

I know there is a dispute regarding SMILE with Fiona Godlee, but promising text nevertheless.

 

Science journals are really good at saying all the right things, but not nearly as good at actually implementing them.

 

I will believe what Fiona Godlee writes only after she addresses the obvious fraudulence of the SMILE trial and the serious ethical violations of the school absence study.

 

I get that.

The Research Council of Norway invited patients to give input on which research projects they wanted done on ME. The Council received massive response from enthusiastic patients.

These responses enabled the Council to target their allocations to ME research. They got several applications and only four projects received funding. One application that got turned down was prof. Wyller who wanted to do a trial on adolescents with ME and Lightning Process.

There's been quite a lot of criticism afterwards that ME patients "ideology" is preventing important research and this turned down application of an LP trial is used as an example of patients getting too much power and are distorting science.

So I am pleased to see BMJ recognising the patient voice as a resource, but I do see the irony of where this is coming from.

 

@Sean

> Hannah Arendt wrote that “people are more likely driven to action by the
unveiling of hypocrisy than the prevailing conditions.”
--- bill moyer, movement action plan, stage 2

i think exposing hypocrisy could be useful.

for example:

qmul is supposed to do science, not attack it.

so alem and many others followed channels to improve science. in response, they and all pwme were attacked. the attacks were transparently bogus.

when dog eats homework, that's not news. when homework eats
dog, that's news. qmul's homework ate its dog.

as a result, many science followers KNOW that qmul are hypocrites. many are receptive to our cause.

===

following channels [moyer stage 2] can highlight hypocrisy. it can also expose contradictions, inequities, scapegoating, misopathy, corruption, fraud, coi, lack of checks and balances, etc.

it seems possible that various journals' editors' high-sounding moral words can similarly be usefully exploited.

i believe a social movement is necessary. there's a thread about moyer here: https://www.s4me.info/threads/strategic-framework-for-activism-with-practical-advice.4472/