Patient Partners in Health Professions Education Research

[Annette McKinnon]

Hi everyone

I'm going to be on a panel and wanted to find out more about the experiences patients and caregivers have being involved in educating health professionals.
I'm sure the knowledge I have is not comprehensive, and I would like to show them a wide variety of ways where patients and caregivers successfully add to professional education.

I think the idea of expertise in patients is also an issue for them. Some have trouble crediting patients with knowledge.
This goes off the stated topic but a question that one of the Fellows in the audience is presenting is this one:

"I would maybe like them to start the discussion by differentiating patient partnerships vs. research participation. How do we determine whether we need to engage patients for example as advisors vs. participants?"

Hopefully more knowledge will set them on a more collaborative career.

Annette

[Candace Skrapek]

Hi Annette
I am currently a patient partner on a POR project looking at the feasibility of engaging patients, families, communities as full partners in the codesign, implementation and evaluation of a nursing program. Our lit review turned up only a few examples of where this occurs. Currently patients often simply contribute by telling their story as an example of a particular health challenge or as role players in other types of learning activities. This project includes 4 nursing faculty researchers and 3 patient partners from varying backgrounds. We have been engaged from the beginning in helping to write the grant application, the ethics approval document and the co design of the survey tool being used. We co authored an abstract. We will also be involved in the analysis, recommendations and knowledge translation activities. I think it is important to remind others that when patients are engaged as partners they contribute not just their lived experiences but they also bring into the team their life experiences, including knowledge and experience, work life, volunteer activities, community connections and other areas of expertise. Participants of research have a more limited role relating specifically to the question under review.

[Rachel Cooper]

Hi Annette,

This is a thread that I've been following for a number of years, both in my professional life as an educator with lived experience, and also in my academic research. In the mental health world, the UK is lightyears ahead of us in Canada in terms of formalizing patients' roles in educating both psychiatrists (MDs) as well as allied health professionals (Nursing, OT, Social work, etc). Notably, the UK refers to patients as "service users" which may be part of the reason why lit reviews may not necessarily yield all the evidence of these practices, and in some cases, their impacts.

Peter Beresford published the Handbook of Service User Involvement in Human Services Education and Research in the last 2 or 3 months, and I've been slowly working my way through it. One of the things I particularly appreciate about the book is that it separates out patient/service user involvement in front-facing education activities from involvement in education research - though there is definitely a lot of overlap between who is doing those activities and the roles/functions they hold.

I can also point you to some recent papers written by my friends/colleagues here in Toronto about patient involvement in psychiatric education, including:

Agrawal, S., & Edwards, M. (2013). Upside down: The consumer as advisor to a psychiatrist. Psychiatric Services, 64(4), 301–302. https://doi.org/10.1176/appi.ps.640413

Agrawal, S., Capponi, P., López, J. et al. From Surviving to Advising: A Novel Course Pairing Mental Health and Addictions Service Users as Advisors to Senior Psychiatry Residents. Acad Psychiatry 40, 475–480 (2016). https://doi.org/10.1007/s40596-016-0533-z

Agrawal, S., Kalocsai, C., Capponi, P. et al. “It was great to break down the walls between patient and provider”: liminality in a co-produced advisory course for psychiatry residents. Adv in Health Sci Educ (2020). https://doi.org/10.1007/s10459-020-09991-w

Two notes: 1) Sacha Agrawal is one of my mentors and his work is generally top of mind, hence my citing these three articles. But he's not the only one locally working in this space. Paula Rowland at UHN has also written extensively on patient involvement in Health Professions Education.
2) I know access to academic literature can be hard to come by - I am happy to share these three articles by email with yourself and anyone else who wishes to read them.

I'm happy to continue this conversation/dialogue with you either on this thread, or by email!

Cheers
Rachel

[Candace Skrapek]

Hi Rachel
Thank you for the information. Our team did find that the info from the UK was certainly ahead as you mentioned. I will share these resources with our team. Do you have a reference for Peter Beresford’s handbook? It would be interesting to take a look at it.
Many thanks
Candace

[Rachel Cooper]

Hi Candace,

Here's a link to the book on the publisher's website: https://www.routledge.com/The-Routledge-Handbook-of-Service-User-Involvement-in-Human-Services-Research/McLaughlin-Beresford-Cameron-Casey-Duffy/p/book/9781138360143

Rachel

[Annette McKinnon]

Thanks Candace and Rachel
There are so many patients involved in Health Education I was reading a paper of Paula Rowland's called

Dilemmas of Representation: Patient Engagement in Health Professions Education by Paula Rowland https://journals.lww.com/academicmedicine/Fulltext/2018/06000/Dilemmas_of_Representation__Patient_Engagement_in.30.aspx

I wish researchers could all get their acts together and actually try to do something about the lack of diversity that causes so much research and hand wringing.
If you're a performer they have (or maybe had since Covid is decimating entertainment venues) a venue ladder. You play in the smaller clubs first.
We need an engagement ladder - a way for new people who are interested to get their foot in the door.

Paula Rowland is on the panel, and Sophie Soklaridis from CAMH I think.. August company. I'm reading more to be prepared. Staying close to home for so long is not the best way to keep your adrenaline up.

[Anita Lambert-Lanning]

Thx much for starting this discussion thread, Annette.

I must admit that (despite) covid19 challenges it was a big surprise to me when the Arthritis Society decided to dissolve the Patient Partners in Arthritis (PPiA) group of volunteer patient partners associated with
The UofT rheumatology associated medical
students training program. It would seem (altho I have not been fully informed) that
this was a decision made well before the patient volunteers themselves were informed.

I for one am somewhat dismayed given the valiant attempts made by patient partners as well as UofT faculty & students to make the teaching sessions compatible in a live web video environment.

The medical teaching environment (much like the rest of the world) must get used to taking every opportunity to continue to learn from patients w-out taking extra physical risks. International web based technologies offer a prime & secure opportunity to demonstrate how this can work on a planet that has allowed itself & its many species to come to such a risky relationship with viruses once again. The viruses are trying to stay alive just as humans are...perhaps "homo sapiens" are the species putting themselves most at risk by lacking in such cooperation. 🤔

Health technology in Canada (tho not w-out its own difficulties) offers an opportunity to medical education & patient health management; one of Canada's premier medical schools (UofT) & dare I say a well known Canadian patient health organization (Arthritis Society) has decided to lockdown a prime example of how patients can & do step up to the plate "voluntarily" to share, instruct & support a health system that has been in dire need of modernization for some decades (not that volunteering should be the situation but alas it is). 😷

If anyone thinks I am offbase in my perspective speaking as a patient with moderately severe to severe osteoporosis & OA feel free to tell me.

Courtesy of Covid 19 et. more to come variants we all face a health care system for seniors that is in major decline & the rest of the patient population (patients & providers) are continuously in need of a more appropriate health care system...medical education included.

Patients & providers (in the long run) must partner up to face up to one of the most serious pandemic challenges in a century. Public health on our planet demands our cooperation.

Why dismiss/discontinue yet another example of patient/provider/trainee cooperation when it is needed most in Canada's medical education & healthcare instruction, management & support systems. 🤔