Influence and Participation toolkit?

[bobbler]

I've put this in advocacy, but it just as easily would work as a topic - with quite different discussion - in 'research'. I also suspect there are different applications and discussions to be had re: 'external' (e.g. in this context of the link 'the workplace') and 'internal' (e.g. ME-specific things such as projects or groups or charities that are being taken forward by and for those with ME)

I've come across the following, which is from Mind: Influence and participation toolkit | Mind - Mind

- and is described as "The Influence and Participation Toolkit is a valuable resource for anyone whose organisation or workplace wants to engage with people with mental health problems in a meaningful way.

The aim is to help you involve people with lived experience when developing your work. We encourage you to use the templates and tools from this toolkit, as well as creating your own."


There are subsections such as 'overcoming challenges': Overcoming challenges - Mind
and Tools, case studies and other resources - Mind

and includes resources/tools such as: identifying participants, setting a good agenda,

and a Methods | Mind's Influence and Participation Toolkit - Mind section, which includes a nice list of ways of involving people with things to look out for in each section.

 

[bobbler]

My questions:

1. I don't know whether there are other organisations who have done similar things out there. But think that this page should perhaps collect anything we can find from different organisations along these lines?

2. Particularly including the good and the 'good ideas/advice',

3. but also perhaps (and maybe a separate page) anything that we can find on anything to do with pwME - and I guess there will be a spectrum there of what is done, and whether some are more appropriate to context or less etc?

 

[bobbler]

And then maybe

4. What is there that is specific to ME, and different levels of ME and different contexts - that need to be added to an ME-specific list, just as you might put risks or things to bear in mind about other conditions, limitations or demographics?

It might be that there are positive ideas such as there is such a things as 'opinion panel' research where participants for market research e.g. students are sort of databanked so if a focus group is needed then appropriately made-up groups who those running the panel could constitute can be done. And governance protocols re: balance vs what is being looked at in a project to suggest make-up and ensuring these have significance either in voice or decision-making or whatever is relevant.

And are there perhaps gaps or adaptations needed in representation for those with ME. Should we have protocols or expectations of what constitutes someone being able to speak for more than their N=1 of ME , consistitutes being able to speak for a subset that is defined or being able to claim 'all of pwme' whether there are groups within that needing to be represented and heard

 

[bobbler]

But making sure that 'involvement' or 'engagement with' those who have ME isn't 'tokenistic' and is diverse, representative etc seems a pretty important topic for all of us to be thinking seriously on.

And indeed representation not being therefore limited by inadvertent boundaries of who could be 'counted' excluding participation or voice implicitly or like with research by drop-outs meaning their 'body' isn't counted

ANd perhaps getting ourselves up to speed with what 'norms' are already out there beyond ME, and what already-written known pitfalls have been discussed for people without ME perhaps gives us useful insight for things already up and running that could perhaps be asked to make changes in certain ways to actually achieve their aims they wish to achieve re: being for and not to or having patient involvement or ... there are endless things here it could apply to. But basically any association stating 'patient voice' perhaps needs to be asked to define 'which and who' given we are a diverse group and we need to also become more expert in what those claiming it would need to demonstrate and be doing in order to actually be meeting that?

And I don't know whether this separates in total as a 'topic' into a number of different strands, or is best with one over-arching pull-together and see if strands develop so open to thoughts?

 

[Hutan]

It does look good @bobbler

I couldn't help reading this in the context of Cochrane

I don't feel listened to
When you ask for people's input into developing services, it's important to be open and honest, and to build trust. People using our services gave us a clear message when we were developing this toolkit: they need to know we're listening to what they say. Taking action as a result of people's involvement and giving feedback is the best way to demonstrate you are listening.

However, it's not always possible to act on everything people tell you, and most people will understand that. Letting participants know what is and isn't possible in advance will help to manage expectations.

...

If you tell people from the beginning that you need their input but you won't be able to feedback to them, most people will still be willing to participate. However, it's much more difficult for people to be told or expect one thing and to experience something different.