Kalliope
Senior Member (Voting Rights)
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.
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.
