Reflections on Patient Engagement by Patient Partners: How it can go Wrong 2023 Richards, Poirier et al

[Andy]

Abstract

As six patient partners in Canada, we aim to contribute to learning and to provide an opportunity to reflect on patient engagement (PE) in research and healthcare environments. Patient engagement refers to “meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation” with patient partners as members of teams, rather than participants in research or clinical care. While much has been written about the benefits of patient engagement, it is important to accurately document and share what we term ‘patient engagement gone wrong.’

These examples have been anonymized and sorted into four categories: patient partners as a check mark, unconscious bias towards patient partners, lack of support to fully include patient partners, and lack of recognizing the vulnerability of patient partners. These examples are intended to demonstrate that patient engagement gone wrong is more common than discussed, and to simply bring these experiences to light.

This article is not intending to lay blame, rather to evolve and improve patient engagement initiatives. We ask those who interact with patients to reflect so we can all work towards improving patient engagement. Lean into the discomfort with these conversations as that is the only way to change these all too recognizable scenarios, and which will lead to better project outcomes and experiences for all team members.

https://osf.io/q3e76/

Now published, see this post for link, https://www.s4me.info/threads/refle...023-richards-poirier-et-al.32439/#post-478732

 

[rvallee]

Always more relevant to have patient experience discussed by patients.

But I disagree with the blameless approach. We're not dealing with toddlers and there is a whole lot of legitimate blame to go around. People rarely change their behavior by being asked nicely or through passive language, and we know for a fact that it doesn't work here.

Lay blame. Lay it where it belongs. It's not as if avoiding bruising egos will ever work here. It's the main reason why almost all patient engagement fails.

We have kind of the same problem in software engineering. Programmers want to work on programming problems, not user problems. But the whole point of programming anything is so that it can be used by someone. That's why people pay for it.

And that's why we have diverse roles and the engineers only run the engineering portion, not the whole show. It's not a solvable problem, it's simply a different one with a different set of skills.

 

[Hutan]

I thought this was a very useful paper. It is well written and clear.

I'd like to see staff of research organisations and research funding organisations read it. Maybe some of us can forward it to people of that sort that we know.

I guess the risk is that it makes such staff even more determined to not engage with patients, because it all seems too hard, and they can't see how any possible benefits could offset the effort. That's where research funders have to step in - they need to have policies that require evidence of meaningful patient engagement in the studies they fund.

 

[Creekside]

I can imagine this leading to hospitals touting their wonderful "patient engagement" policies ... and blaming all the failures on the patients.

 

[Sean]

People rarely change their behavior by being asked nicely or through passive language, and we know for a fact that it doesn't work here.

Authority rarely, if ever, willingly hands over power.

Mostly it has to be taken from them. Especially when their hold on it is not legitimate in the first place.

 

[Andy]

Now published.

Abstract

As six patient partners in Canada, we aim to contribute to learning and to provide an opportunity to reflect on patient engagement (PE) in research and healthcare environments. Patient engagement refers to “meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation” with patient partners as members of teams, rather than participants in research or clinical care.

While much has been written about the benefits of patient engagement, it is important to accurately document and share what we term ‘patient engagement gone wrong.’ These examples have been anonymized and presented as four statements: patient partners as a check mark, unconscious bias towards patient partners, lack of support to fully include patient partners, and lack of recognizing the vulnerability of patient partners.

The examples provided are intended to demonstrate that patient engagement gone wrong is more common than discussed openly, and to simply bring this to light. This article is not intending to lay blame, rather to evolve and improve patient engagement initiatives. We ask those who interact with patient partners to reflect so we can all work towards improving patient engagement. Lean into the discomfort with these conversations as that is the only way to change these all too recognizable examples, and which will lead to better project outcomes and experiences for all team members.

Plain English summary
We are six patient partners in Canada who aim to contribute to learning and to provide an opportunity to reflect on patient engagement (PE) in research and healthcare environments. Patient engagement refers to “meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation,” where patient partners are members of the teams, rather than participants in research or those seeking clinical care. It appears more has been written on the benefits rather than the risks of patient engagement and we feel it is important to document and share what we call ‘patient engagement gone wrong.’

We have anonymized these examples and sorted them into four statements: patient partners as a check mark, unconscious bias towards patient partners, lack of support to fully include patient partners, and lack of recognizing the vulnerability of patient partners. These statements and their examples are meant to show that patient engagement gone wrong is more common than discussed openly, and to simply bring this to light.

With this commentary, we do not mean to lay blame, and instead wish to evolve and improve patient engagement initiatives. We ask those who interact with patient partners to reflect so we can all work towards improving patient engagement. Lean into the discomfort with these examples, as that is the only way to change these all too recognizable statements, and which will lead to better project outcomes and experiences for all team members.

Open access, https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-023-00454-1