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This, via @Gail_MacKean 
As a guideline author, I have been thinking a lot lately about how exclusive the practice of creating recommendations is, and how that limits their impact & effectiveness. Quick thread 1/7
@TheTyee https://thetyee.ca/Analysis/2021/01/05/Messaging-Forgot-Most-Cant-Stay-Home/?utm_source=daily&utm_medium=email&utm_campaign=050121
As a guideline author, I have been thinking a lot lately about how exclusive the practice of creating recommendations is, and how that limits their impact & effectiveness. Quick thread 1/7
@TheTyee https://thetyee.ca/Analysis/2021/01/05/Messaging-Forgot-Most-Cant-Stay-Home/?utm_source=daily&utm_medium=email&utm_campaign=050121
Expert panels write guidelines (public health or clinical). Experts are, almost exclusively, appointed by leaders so have privilege via status/reputation. Representation of ppl that are most impacted by disease is limited to non-exisitent. 2/7
The absence of this perspective means we will create recommendations that are attainable ONLY by ppl that write them.
Implementation science can help bridge the gap - but often the bridge is simply too far. 3/7
Implementation science can help bridge the gap - but often the bridge is simply too far. 3/7
What's worse, is that systematic exclusion of huge segments of the pop'n from clinical trials, practice and clinical/public health leadership means the divide between the "experts" and those with valuable lived experience grows wider, trust is eroded, disparities worsen. 4/7
We also develop divisive language like "clinical inertia" and "non-compliant/non-adherent" to describe folx that simply aren't getting with the expert-defined program. This must stop- its reductive, unfair and unhelpful. 5/7
We absolutely need evidence to guide us but we need to acknowledge the limits of evidence & understand that ppl w/ lived experience have wisdom that fills the gaps. If we are "all in this together" there should be a visible effort to be inclusive, I haven't seen this. 6/7
Bottom line: Use both an evidence-based and inclusion-focused approach to create clinical & public health guidance. Patient & public involvement increases trust & quality of product. Opaque, closed-door, elite, blue-ribbon panels must end. 7/7
