Strategy for Patient Oriented Research Capacity Development Framework.

[Annette McKinnon]

I have been reading the SPOR Patient Engagement Framework but somehow never really noticed the Strategy for Patient Oriented Research Capacity Development
Framework.

While I've been reviewing papers recently I have seen some of them that are highly professional, in some cases very scientific, and what I see is a lot of capacity building for researchers, from summer students up to post docs and expert researchers, but not much that addresses all of the following points:

• Patients have the capability and support to meaningfully contribute to and participate in research;

• The health research enterprise supports viable career paths for patient-oriented researchers and health professionals;

• All participants in patient-oriented research receive the proper training and support, and all participants should have equitable access to the proper training and support;

• Patients, researchers, health practitioners, administrators, and policy-makers work collaboratively towards common goals; and,

• Relevant and transformative knowledge is generated and applied to improve health outcomes.

• From the framework at https://cihr-irsc.gc.ca/e/51465.html

It's the 3rd point I'm thinking that they lack. And the researchers get a lot of mentoring too, while patients have PAN which I find very helpful, and their disease groups (which in fact I often don't consider to be 'patient' groups).

It's also notable that in some of the grant applications they go for the 'famous patients' or the ones they have worked with for many years, and maybe a small panel which is certainly not the SPOR ideal.

What do you think? Feel free to call me Don Quixote if you think I'm getting too picky.

Annette

[Diana Ermel]

Hi Anette

I would say that is not quite the case in SK. There are training modules that were developed nationally and tweaked by jurisdictions. In Sk they are co-delivered by a staff person from the patient engagement platform and a patient. I have been the patient partner in Regina for the past year and they have been co-delivered in Saskatoon for several years. We are hoping to make them more remotely accessible using technology. All researchers applying for SPOR grants have to take the modules. Patients (and even just interested persons) attend these session as well (not mandatory) Do need more concrete work in terms of skill building for patient partners. There is a 3rd module re team building, but as far as I know is very underutilized, but has been identified as an issue.

I was going to start a new discussion, but my request it fits in with your post. I know each jurisdiction is writing their SPOr proposals in different ways. Here there was a lead writer and team for each component. Each team had 2 -3 patients. There is also a separate writing team which I am on. There is a writing team member assigned to each component and I am assigned to the patient engagement piece. Right now we are working with the writing leads on integration across the components, one of which is Learning Health System (LHS). Sk has some infrastructure in this area, but not named LHS. I know the concept is alive and well in BC, not sure about other jurisdictions. I am wondering if anyone has ideas on this topic as relates to patient engagement, especially in terms of how. when and where. I have an excellent article Menear, a framework for value-creating learning health systems, but more what rather than how. I will make sure all the points you raised are in the capacity development component. Thanks for any ideas re any of the components. Sk is adding a 5th component re Indigenous Health. A great deal of excellent work has already been done here, but as with everything else, not enough. Diana