Patient Engagement in Medical Educatioin

"Medical schools have it completely backwards": Why we need health education transformation

"In the ReMed program, students get an entirely different perspective from what they're used to. We ask artists and writers come in as themselves and bring their perspective and offer practices, not adapt themselves to the medical perspective"

https://lowninstitute.org/news/blog/education-transformation /

Annette

Fabulous philosophy. Thanks so much for this.

Very interesting...thanks for sharing!

I've been teaching in the UBC medical undergraduate program for four years: patient safety and quality improvement. I am very much the exception as an instructor and not a specimen or standardized (actor) patient or storyteller.

Are any other PAN members teaching the curriculum to medical students in the classroom? I'd love to hear how it's going for you.

Here's an exciting article about what's going on at the University of Alberta.

See if this link works for you (it might not). Otherwise, contact me for a pdf by email.
carolyncanfield@mac.com

Patient-centred education: How do learners’ perceptions change as they experience clinical training?

Fong, S., Tan, A., Czupryn, J. et al. Adv in Health Sci Educ (2019) 24: 15.

Yes it really changes the focus for sure. I just did the keynote presentation for the bc specialist doctors symposium in Vancouver. There was an overwhelming positive feed back from the drs that they need more of this- patients perspective... just trying to figure out how to get more involved since it is a rare thing that I as a patient like doing positive presentation in large conferences. sarah

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Thanks for your prospective and yes I will see how the next level of engagement will lead me.

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Sarah, you are so right! The professionals want to feature patients as compelling speakers, even running sessions. Often times they don't know how to find the people they seek to invite.

Your connections through BC's Patient Voices Network can certainly help open doors. Let them know how much you find public speaking rewarding. They do get asked for that kind of help from professional bodies and provider organizations. There are so many conferences and workshops, the potential is great as the professionals realize how much their deliberations can benefit from the patient perspective as more than a "story" --but also a truly capable and engaged person committed to improvement in the healthcare system.

Be sure to follow up with the specialists' forum organizers and people from the audience who sought you out. Everyone is so busy that your contact information might just drop out of sight. A friendly follow up note is very helpful. It's amazing how their connections can lead to further invitations from unexpected healthcare venues that you might not ever reach. It's a matter of networking.

Congratulations on your success! Best wishes.

I have not heard of this anywhere in Ontario, but would welcome this opportunity. The CPSO did hold regional meetings asking for feedback on curriculum recently. But, disappointed none took part in the workshop session. They left that to a very young consulting group.

Kathy, what’s CPSO? I have trouble with acronyms, and they seem to abound in healthcare more than anywhere I’ve ever been. Maybe you could explain a bit more? Thanks!

Carolyn

Sorry. Should have printed it in full. It’s the College of Physicians and Surgeons of Ontario. They have a Licensing, Investigation and Enforcement, and Policy-Making function. They may not actually write the curriculum, but they do approve it and enforce it. 6 tables of 6 very wise and experienced PFAs gathered to provide input. I can only speak for the 6 at my table. We felt marginalized and undervalued. But...big but..all our input was awesome!

Kathy, are there still opportunities to provide input to the CPSO regarding training of MDs?

Hi Kurtis. I believe so. That meeting just took place February 21st. And they were holding more open forums across the province. Your best bet would be to go to the CPSO website.

Thank you, Kathy. I will have a look. I am brand new to PAN, but have half a century of lived experience with health challenges and the health care system. Happily, I have have had a lot of good experiences and it's those as well as the bad experiences that have made me want to improve things for others. Are there people at the CPSO you would recommend as honest people open to constructive change? Thank you.

Welcome to the group Kurtis

I just saw the CPSO report on Medical marijuana based on a consultation they had

http://policyconsult.cpso.on.ca/

They have 2 consultations open at the moment that invite public input

These consultations are now open for feedback:

It's interesting to see what the doctors say about these issues, and it can be illuminating to see what they say. That's were I noted the argument between the GPs and specialists about how they handle referrals.

It's a fair bit of work to read the policy and then comment on it but well worth it I think.

In another area the Canadian Medical Association (CMA) now has a patient advisory panel recently chosen, and they had patients at their last conference, subsidized by the CMA

Annette

Thank you, Annette, will look at these open consultations. Do you know people at the CPSO who are honest and open to feedback. I am happy to participate in any appropriate public processes to improve health care, but are there people at CPSO to whom constructive feedback can be sent?

thanks

Hi Annette,

At the CMA in Winnipeg I was very impressed by Dr. Gigi Osler. I am glad you had the opportunity to tell her about PAN. I feel the CMA needs to know more about PAN and patient advisers. I feel patient advisers need to be someone who lives with a chronic illness and/ or is a frequent user of our health care system. I feel CMA has chosen patient advisers who have a large social media following and have a bloq to prove they are good public speakers but on the down side they had a acute injury 8- 10 years ago, not the same. I like and do a lot of public speaking but do not have a blog to prove my capability. I live with 2 chronic conditions and it is much different than a one time mishap years ago with the health care system. Just my thoughts.

To end my rant, thanks for taking the time to connect with Dr Osler, hopefully she will take time to learn more about PAN.

Virginia

Thanks Annette. Very interesting. That board requirement was new to me. Never mentioned in their brief intro. I tried to post the info about the focus group, but not successful. Optimus was the name of the consulting group that ran the CPSO workshop.

Thank you, Annette, Carolyn, Virginia and Kathy. I am going to look into the Public Appointments Secretariat. I believe patients should have a strong voice in the CPSO, which may pay lip service to client centred care but has a long way to go in terms of ensuring that doctors actually practise this.

Always happy for more feedback.

Kurtis

Hi Virginia, Just a quick reassurance: I am not active on social media. I don't write a blog.

I follow a few people on Twitter to guide my learning about healthcare, but have never posted a tweet myself. No Facebook or Instagram accounts; I don't actually know how they work. My LinkedIn profile is only to document my healthcare participation for others to learn what I can do just in case it might be helpful to them. I certainly don't think having a social media presence is a necessity.

What I have done is introduce myself in person to people I admire. If I'm in a room with Gigi Osler, I muster all the confidence I have, approach her, introduce myself and tell her why something she has said or does is important to me. And then I state what I want to do to have a positive impact and ask for advice. I practice this "elevator pitch" so I'm ready if the opportunity suddenly arrives, even on the sidewalk if I recognize someone.

I try to learn from a wide diversity of people who are effective, then follow-up by brief email to share my ideas and seek further advice, welcome any contact and then act on suggestions for whom else to meet and what else to read. I might follow-up in correspondence to say thank-you and why that suggestion was helpful, plus what else makes me curious.

The internet allows me to read and learn endlessly. For example, my direction often comes from twitter star André Picard @picardonhealth, the open access professional journals and websites like HealthyDebate.ca.

Your point about actual medical experience is important. The reality is many patient advisor roles make it very difficult for a big portion of the patient and caregiver population to participate. I wrote about that here in December in a journal aimed at Canadian healthcare professionals who might consider recruiting patients and caregivers for their work.

So as you say, many "patient advisors" are quite a long distance from their patient experience. I am definitely one of those. My galvanizing experience was over ten years ago suddenly becoming a widow from fragmented care with no accountability. I knew I had capabilities that others might not, so I felt moved to action. Alone in the world, I can devote all my time to this work. For a million reasons, others cannot. It's a rare privilege, so I do it.

To foster integrity in my work, I spend most of my time opening doors for others, enabling voices that would not otherwise be heard to get access. Helping to found PAN is a big move in that direction. The stronger are our networks among members, the better each of us can influence change in healthcare for patients and for Canadian society. That's my motivation and the rewards for my efforts.

So the CMA Patient Advisory panel is new. The CMA undoubtedly wants to show off patient advisors with well-established reputations. That's not where I would look to make a big system impact, so please don't feel marginalized. There is a wealth of opportunities all around us. More healthcare entities are learning they have to open more than as-if "professional" roles for patients to partner with their organizations. The power of our movement is in our diversity. We need "everyone" participating as much as possible, so that means different and more access.

Don't hesitate to develop relationships with people in areas important to you and then ask how you can contribute to shared goals. It's so important to develop these new models of participation, crafted for real people with essential experience and knowledge of health interactions. Go for it! And don't forget to ask PAN members for help and advice along the way. That's what we are here for.

Best wishes, Carolyn

P.S. to Kurtis: learn or ask who has taken these public roles before. Then interview them about their experience, who else is on the panel, and did they feel they made a difference. That will help you decide if you can revolutionize the role for the impact you desire. Go for it and please keep in touch with PAN so we can all learn from you and support you if you need it. Thanks for your passion!

Thank you, Carolyn. I appreciate your encouragement and am glad that you share your experience and insights via PAN. Any thoughts on how to make hospitals more accountable to patients? The Patient Ombudsman can only (according to its legal mandate) check to see that a hospital has a complaints process in place and goes through the motions of following it. The Patient Ombudsman cannot actually require a hospital to resolve patients' concerns with the patient. The CPSO can't require a physician to apologize.

In the end, with health care, whether it's doctors or hospitals, we need to rely on the good will of doctors and administrators to devote themselves to the care of patients. When they fail in this regard, as patients, we are stuck.

Are there PAN groups dealing with this issue?

Thank you

Kurtis

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