Report by Hilda Bastian, Independent Advisory Group Lead
Posted online: 20 December 2023
Note: Background information on this project, including previous reports, is here. The views expressed in this report are those of the author, and are not necessarily shared by the Independent Advisory Group (IAG), the review team, or Cochrane.
This is the fourth report on progress with this project. This time, there are updates on:
As discussed in my last report, the editorial note on the current review on exercise and ME/CFS will be revised. The IAG has been considering the practice of editorial notes on Cochrane reviews, and discussing possible contents for the revised editorial note. We have also been discussing potential peer reviewers to recommend to Cochrane.
20 December 2023
The original plan was around two years for the whole updating process. However, this was set back, firstly as Cochrane’s editorial unit pivoted to working on Covid reviews, and then by Cochrane’s focus on major organizational changes. Those organizational changes included cutbacks, and the shutdown of the review group that had been shepherding this review.
The editorial processes for Cochrane reviews have changed a great deal as a result. So a plan for progressing this review within the new editorial framework was necessary. The revised editorial structure to support this review has taken shape. I expect details will be finalised by my next report, including a preliminary timetable.
We also plan to get the IAG’s first consultation underway in the early weeks of the new year. That is a consultation on a paper summarising past critiques of the Cochrane review – see my last report for more details.
As a result of the complex internal restructuring Cochrane began in 2021, the organisation had a new communications team. Early in December I asked for a meeting with the people involved with managing complaints, to discuss issues with recent complaints and how responsiveness could be improved.
Complaints and questions are being sent to multiple individuals and addresses across Cochrane and the IAG, so coordination is critical to ensure that issues and concerns don’t fall through the cracks. Our meeting was very useful for clarifying our respective roles and expectations.
We agreed on pathways for referring complaints, along with continuing liaison. This should improve responsiveness in future. The Cochrane team had been working on several system improvements for some time, too, so there will be more to report on this soon.
Since the last report, there have been updates at the information page about IAG members. The form for disclosures of interests for this IAG has been updated, and there is an up-to-date disclosure on this new form for all members.
There is also a first bio for the latest addition to the IAG, Katharine Cheston, and minor updates to bios for two other IAG members, Lily Chu, and Penelope McMillan.
There is one final vacant position on the IAG. A primary consideration in filling this position will be addressing concerns expressed about a perception of bias in the makeup of the IAG.
The current makeup of the IAG is the lead, plus two additional methodologists with specialist expertise in Cochrane reviews, and seven ME/CFS stakeholders. The stakeholders include three representatives of people with ME/CFS nominated by organisations (the European ME Alliance, #MEAction, and ME/CFS Australia), and four individuals.
Stakeholder gaps will also be taken into account in this final appointment – in particular, for a medical practitioner working with patients with ME/CFS.
Since this IAG was announced, there have been multiple nominations of potential candidates for the group. If anyone else would like to be considered themselves, or would like to suggest someone else, they could email me at Cochrane.IAG@gmail.com by the end of January 2024.