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 10th March 2020

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Cochrane reviews can be updated because a review’s methods or included evidence may be out of date, or in response to concerns.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 take about two years from early 2020.

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 in the process of re-locating: we will notify progress here.

The review’s revision and update will be conducted by systematic reviewers from Cochrane Response (Cochrane’s evidence consultancy unit), and additional new co-authors are being considered. The project manager for this update is the Cochrane Senior Editorial Officer, Rachel Marshall.

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.

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

  • Rachel Marshall, a Senior Cochrane Editorial Officer 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.

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.

Who will be the members of the IAG and how will they be chosen?

Cochrane’s Editor in Chief appointed the IAG lead, Hilda Bastian. There will be a further nine members. Eight of those members will be chosen by the lead, in liaison with the update’s project manager, and the final member will be chosen after advice from the IAG at its first meeting.

In addition to the lead, the members of the IAG will have a range of expertise, including:

  • People living with ME/CFS;
  • Clinicians; and
  • Researchers, including a systematic review methodologist.

Individuals for these positions will include some representatives nominated by advocacy groups for people living with ME/CFS, some people who have been involved in discussion or review of the current Cochrane review, and clinicians and researchers active in the field. Unsolicited expressions of interest and suggestions are also being considered.

Suggestions have been received since the announcement of IAG lead on 13 February 2020. Members are being invited and appointed in several waves starting in March 2020, with a concern for gender balance and the range of geographical locations of members.

Members of the IAG who are living with ME/CFS may nominate a proxy, and can expect reasonable adjustments for their participation. There will be support to engage from the IAG lead and the Cochrane Consumer Engagement Officer, and if desired, technical and training material support provided by Cochrane staff.

Members of the IAG and nominated proxies will be required to complete a declaration of interests form, and declarations will be made publicly available. They will be expected to comply with Cochrane’s policy conflicts of interest and Cochrane Reviews applicable to authors.

Nominating groups will also be asked to declare interests.

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?

Share