Looking for Patient Engagement Guidelines for Health Standards Development. Advocating for Better Engagement Practices.

[Katie Upham]

Hi folks,

I was wondering if any among you know of engagement guidelines of patient partners or people with lived experience for health standards development? Myself and other people with lived experience are struggling with engagement in this health standards development and I have an upcoming meeting to express challenges and solutions for this.

However, when problems like this arise, I find that sometimes, I am deemed to have little to no credibility. I just feel like a cranky, whiney patient partner with expectations that are too high. I always find these conversations very uncomfortable but I cannot help myself, I must have them.

I don't think I am just cranky, I feel I have just been doing this long enough to know what accessible, meaningful engagement should entail and I'll admit, I have less patience as time goes on with engagements that do not adhere to at least some of the basics. I find that these meetings can go much better if I have something to advocate with and back up what I am saying. I know of standards and guidelines for research engagements but they don't all apply in this setting. However - if you have just those, please mention them too!

I suppose, I also wonder, how do other patient partners approach similar situations in advocating for better engagement practises?

[Chris Johnston]

@Katie-Upham Hi Katie,

I'm sure you're not cranky though I think we all fear we'll be seen that way on occasion, particularly when we're raising concerns.

I haven't seen anything that's specific to patient engagement in health standards development - not even from HSO or CSA.
However, there are some interesting resources around guidelines development - which is in the same ballpark at least.
I've pasted some resource links below

Personally, I'm not an expert but I've got some experience as I've been involved in two standards projects with HSO, and prior to that several internal projects with a BC health authority. Happy to chat virtually any time if you want to brainstorm approaches etc.

Resource links:

GIN-McMaster Guideline Development Checklist
Particularly:

• Section 3: Guideline Group Membership

• Section 4: Establishing Guideline Group Processes

GIN-McMaster Guideline Development Checklist extension for engagement

Particularly the Supplementary Files linked at the end of the paper:

• 3: Evidence for engagement from the series of reviews

• 4: Rationale and additional considerations for engagement with interest-holder categories

• 6: Explanation and Elaboration for each Interest-holder Group

• 7: Specific considerations for engagement of each interest-holder group

GIN PUBLIC Toolkit: Patient & Public Involvement in Guidelines
2015
and the updated GIN PUBLIC Toolkit 2023