User involvement in a Cochrane systematic review: using structured methods to enhance the clinical relevance, usefulness ..., 2015, Pollock et al.

User involvement in a Cochrane systematic review: using structured methods to enhance the clinical relevance, usefulness and usability of a systematic review update
2015
Authors

Abstract
Background

This paper describes the structured methods used to involve patients, carers and health professionals in an update of a Cochrane systematic review relating to physiotherapy after stroke and explores the perceived impact of involvement.

Methods
We sought funding and ethical approval for our user involvement. We recruited a stakeholder group comprising stroke survivors, carers, physiotherapists and educators and held three pre-planned meetings during the course of updating a Cochrane systematic review. Within these meetings, we used formal group consensus methods, based on nominal group techniques, to reach consensus decisions on key issues relating to the structure and methods of the review.

Results
The stakeholder group comprised 13 people, including stroke survivors, carers and physiotherapists with a range of different experience, and either 12 or 13 participated in each meeting. At meeting 1, there was consensus that methods of categorising interventions that were used in the original Cochrane review were no longer appropriate or clinically relevant (11/13 participants disagreed or strongly disagreed with previous categories) and that international trials (which had not fitted into the original method of categorisation) ought to be included within the review (12/12 participants agreed or strongly agreed these should be included). At meeting 2, the group members reached consensus over 27 clearly defined treatment components, which were to be used to categorise interventions within the review (12/12 agreed or strongly agreed), and at meeting 3, they agreed on the key messages emerging from the completed review. All participants strongly agreed that the views of the group impacted on the review update, that the review benefited from the involvement of the stakeholder group, and that they believed other Cochrane reviews would benefit from the involvement of similar stakeholder groups.

Conclusions
We involved a stakeholder group in the update of a Cochrane systematic review, using clearly described structured methods to reach consensus decisions. The involvement of stakeholders impacted substantially on the review, with the inclusion of international studies, and changes to classification of treatments, comparisons and subgroup comparisons explored within the meta-analysis. We argue that the structured approach which we adopted has implications for other systematic reviews.

https://systematicreviewsjournal.biomedcentral.com/articles/10.1186/s13643-015-0023-5

 

Like never trying this again? Must be hard that the first thing they agree on is that what was done before was crap. It bruises egos and that makes everything that follows antagonistic. Rightfully, but it's hard to accept as professionals that you have delivered garbage.

We find the same with the NICE review, and the involvement of patients was vilified precisely because it contradicted the traditional flawed model. It's the one thing they can't get over with, that militant patients just made them look like fools, in the likely words of Wessely, made patient-hating charlatans look like patient-hating charlatans.

And the same again with Long Covid, although generally not Cochrane but in Canada they will be involved, there is barely any agreement or overlap between the priorities of patients and those of the institutional decision-makers. And without fail the patients were ignored, and now they have nothing to show for it and look like incompetent fools who were warned about the mistakes they were about to make by complete amateurs.

Really looks like the main lesson here was never to attempt this again, in fact they've since given veto powers, arbitrarily applied of course, to authors to prevent any such thing from happening after publication.