Stakeholder engagement in high-profile reviews pilot

Introduction

Cochrane is conducting a pilot project for engaging stakeholders (such as consumers, clinicians and researchers) in the development of high-profile Cochrane Reviews. The pilot will develop and test a process for involving stakeholders in updating the Cochrane review on Exercise therapy for chronic fatigue syndrome. This webpage provides information and regular updates on the progress of the pilot and the update of the Cochrane review.

Frequently asked questions (FAQs) about the update of the Cochrane review on ‘Exercise therapy for chronic fatigue syndrome’

FAQs last updated 31 May 2021

Why is the review being updated and how long will it take?

Cochrane reviews can be updated because a review’s methods or included evidence may be out of date, or in response to concerns. This review is being updated for all those reasons.

Cochrane’s Editor in Chief, Karla Soares-Weiser, considered the range of concerns expressed about this review and concluded the review needs a patient-focused, contemporary perspective on exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The current review approaches the issue with a research question and a set of methods from the early 2000s, reflecting evidence from studies that applied definitions of ME/CFS from the 1990s. In addition, the results of any relevant studies available after May 2014 are not included.

The complete updating process for the review is expected to be complete early in 2022. There will be monthly reports on progress from June 2021. The first progress report, from May 2021, is here.

More on this: Cochrane’s statement announcing the amendment and planned update process

Why was the Cochrane review amended in October 2019?

The amendment aimed to address some of the concerns raised about the review in the short term, pending the lengthier process of a complete update.

The changes to the review related to the limited applicability of the evidence given the definitions of ME/CFS in the studies, long-term effects on fatigue, and limited assessment of potential harms.

More on this: Cochrane’s statement announcing the amendment and planned update process

Is the review update being done by the authors and editorial review group of the current review?

No. The author team of the current review have stepped down. The editorial "home" of the review is now the Cochrane Musculoskeletal, Oral, Skin and Sensory Network (MOSS) Network, in collaboration with the Cochrane Pain, Palliative and Supportive Care (PaPaS) group. You can read more about this and the new author team here.

The biographies and declarations of the author team are here.

Why is there an Independent Advisory Group?

The goals of the Independent Advisory Group (IAG) are to:

  • ensure and facilitate responsiveness to stakeholders' concerns; and
  • improve the relevance, accessibility, and credibility of the revised and updated review.

The involvement of representatives of advocacy groups for people living with ME/CFS from different parts of the world is intended to help ensure a patient-focused perspective on the review’s questions. 

The lead for the IAG, Hilda Bastian, was chosen by the Cochrane Editor in Chief. Hilda has been a health consumer advocate and researcher, and has held many roles with healthcare bodies. She was chosen for the broad support seen for her writing on the specific concerns of people with ME/CFS related to this review, as well as her understanding of the methodology of systematic reviews.

You can see the biographies and declarations of interests of the IAG members here and read about how they were chosen here.

The IAG will be supported by Cochrane staff, in particular:

  • Rachel Marshall, Editorial Lead at the Cochrane Editorial and Methods Department, who is the update’s project manager; and
  • Richard Morley, Cochrane’s Consumer Engagement Officer.

More on the background: announcement of the appointment of the lead for the IAG 

More on Cochrane’s position on consumer involvement: The statement of principles for consumer involvement in Cochrane

Will there be ways for the views of people other than members of the IAG to be heard?

Yes. Cochrane has a commenting function that can be used to submit comments on the updated protocol and review when they are published. The protocol will set out, in detail, the proposed scope and methods for conducting the review. The drafts of both the new protocol and the updated review will be peer reviewed before publication. A draft protocol will also be available for a brief public consultation period, which is anticipated to be in the third quarter of 2021. 

People can communicate directly with the IAG via the email address, Cochrane.IAG@gmail.com. The email account is not monitored by members of Cochrane’s staff. When the IAG finishes its work, the contents of the account will be archived at Cochrane.

In addition to the IAG itself, the IAG lead will convene an email discussion group for groups representing people living with ME/CFS. The IAG lead, in consultation with other participants, will also develop other opportunities for stakeholder engagement.

What will the IAG do?

The IAG will advise the authors of the review. It is anticipated that the IAG will be:

  • Advising on the language used to describe ME/CFS;
  • Advising on key issues for revising the review’s current protocol;
  • Reviewing and providing an IAG response to the drafts of the protocol and review;
  • Suggesting peer reviewers;
  • Reviewing the revisions made by the author team following peer review;
  • Considering issues raised by peer reviewers, stakeholder groups, and other readers about the protocol, the process for updating the review, and the review.

The IAG will shape its own role, consider gaps in its membership, and determine communication processes and confidentiality in the update of the review. Meetings will be conducted by teleconference and most communication will likely be over email.

The IAG lead will recruit members in liaison with the Cochrane project manager, and is the IAG’s spokesperson. She will facilitate its discussions and chair its meetings, and coordinate its responses to the authors. The IAG lead will also convene an advocacy group email discussion group and other means of stakeholder engagement. She has been offered an honorarium.

What happens if the IAG and the review authors do not agree on an issue?

If that happens, the Cochrane Editor in Chief will have final decision-making responsibility.

Where can we get updates and answers to other questions?

General enquiries or feedback about the update of this review will be referred to the IAG for response.

Archive of previous versions of this webpage:

Share