Peter Tugwell and our team have received funding to develop guidance about how to identify, engage, and involve stakeholders (including patients, practitioners, policy-makers, research funders, etc.) in guideline development. The project includes a team of over 100 stakeholders internationally, called the MuSE Consortium https://methods.cochrane.org/equity.../stakeholder-engagement-guideline-development
https://twitter.com/user/status/1442493478873690127 Direct link to their survey, https://www.surveymonkey.ca/r/FZN9N2C Quote: We would like to get your opinion about how and when members of the public should be engaged in the guideline development process. By ‘members of the public’, we are referring to members of the general population within a defined geographic area, excluding patients, caregivers and health professionals, living or working with the condition of interest. We consider patients and caregiver’ to be a separate stakeholder group. When we say ‘guidelines’ we are referring to clinical practice guidelines, which guide decision making about treatments, as well as public health guidelines, such as those you’re probably familiar with related to COVID-19, like wearing a mask when in public.
This seems to be a loaded statement. Why would patients and caregivers be considered separately, and more to the point, how separately?
There seems to me to be something badly wrong with this whole idea. What you want to do to optimise a guideline is to make sure you get information from all groups of people who may have important information about what the reliable evidence really is on what matters to patients and what can usefully be done to help. The value of those groups to the process has absolutely nothing to do with them being stakeholders and in fact it is likely to be best to pick people from those groups or from related groups who have the relevant information but who are not stakeholders as such. The error of the idea is exemplified by the rules for NICE committee membership. You are eligible if you treat ME but not if you work in a closely related field and have observed ME being managed by colleagues but have not been involved yourself. You cease to be eligible if retired (and therefore are freed of competing interest).
Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation https://systematicreviewsjournal.biomedcentral.com/articles/10.1186/s13643-020-1272-5 so in the end it all depends on who they 'invite'.
