Patient Engagement in Medical Educatioin

[Annette McKinnon]

"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

[JoAnne Mosel]

Fabulous philosophy. Thanks so much for this.

[Samira Chandani]

Very interesting...thanks for sharing!

[Carolyn Canfield]

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.

[sarah hamilton]

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

Sent via Groupsite Mobile.

[sarah hamilton]

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

Sent via Groupsite Mobile.

[Carolyn Canfield]

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.

[Kathy Smith]

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.

[Carolyn Canfield]

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

[Kathy Smith]

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!

[Kurtis Kitagawa]

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

[Kathy Smith]

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.

[Kurtis Kitagawa]

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.

[Annette McKinnon]

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:

• Complementary/Alternative Medicine

• Delegation of Controlled Acts

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

[Kurtis Kitagawa]

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

[Virginia McIntyre]

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

[Kathy Smith]

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.

[Kurtis Kitagawa]

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

[Carolyn Canfield]

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!

[Kurtis Kitagawa]

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

[Carolyn Canfield]

Kurtis, can I suggest you start a new thread for this topic. I have some suggestions for you! But we've strayed from patient roles in medical education. Actually, that's the way I'm trying to change future generations of doctors and other health professionals --while they are still in school. But repost your question in a new topic and I promise to reply.
Carolyn

[Virginia McIntyre]

Carolyn, Thank you for your detailed response. I appreciate the honesty and advice. This is important as I move forward.

I still have lots to learn from you and others who have been doing this for many years,

Thanks

Virginia

[Carolyn Canfield]

You are more than welcome! Medicine is so full of difficult traditional power gradients that it is easy to feel intimidated and paralyzed. I have certainly had my discouraging moments. I hope that PAN connections give us a feeling of legitimacy and possibility. There are many health professionals who truly want our help and want to treat us respectfully. All we have to do is connect up! So follow your best instincts and seek advice from everyone you can. Congratulations on your commitment!

[Kurtis Kitagawa]

Thank you, Carolyn. I don't know how to create a new discussion topic. I only started using PAN yesterday. I filled in my profile a few days ago, but posting a few comments yesterday and today are the first steps I have taken with PAN. Would be grateful if you could point me in the right direction to learn how to post a new question.

thank you

[Carolyn Canfield]

Sure! Under the large heading above, "Discussion Topics", click on the small text "Return to About Public Involvement in Healthcare". On the new page, you will see on the upper right "+ Create New Topic".

Now you are rolling!

To learn more about using Groupsite [yes it is a bit clunky but cheap!] go to the home page by signing in or clicking on the PAN logo and on the right hand column, see "How to Use Groupsite".

Best of luck! Thanks for asking. See you on a new topic thread soon!

[Carolyn Canfield]

Hi Kathy. Below is a cut and paste of the Thunder Bay event notice that you sent to me.

Maybe you can describe how this promotion stayed true to its promise to "inform and shape" their future strategic plan? Also who impressed you positively or not so much? That might help Kurtis look into further opportunities to contact or influence the College.

The event invitation does not mention anything about influencing how doctors are trained. A Google search turned up no other such events scheduled. But most important, I don't think it is correct to say that the College approves or enforces physician training.

I looked at the Ontario College's website to learn about training in their current strategic plan but see only remedial education for disciplined docs and a limited role in continuing professional development (CPD) that is referred to as "proactive". Nothing about training doctors. I find they have an Education Committee, with membership in the dropdown tab here. And here you can see it meets only 2 full days and 3 half days a year.

Accreditation is the job of the Association of Faculties of Medicine of Canada (AFMC) that is made up of all the Deans of medical schools across the country. The Royal College of Physicians and Surgeons of Canada has the principal role in designing medical education (including CPD) with the CanMEDS framework and administering residency exams to qualify for each specialty including family practice, before a doctor can be licensed by the provincial Colleges like the CPSO.

So I'm a bit mystified by your experience at the meeting in Thunder Bay. Please tell us more that doesn't violate the confidentiality mentioned below. I'd love to learn that the Ontario College is doing something that other provinces should learn about and copy!

Best regards, Carolyn

===============

Have your say in the College of Physicians' future direction! Join us for a focus group discussion on February 21, 2019 in Thunder Bay!

About this Event

In early December, thousands of physicians completed our strategic planning survey and many expressed interest in participating in open forums to further inform the CPSO’s work. The discussion is important and will help inform and shape the College’s strategic direction in 2019 and beyond!

The CPSO has engaged the consulting firm OPTIMUS|SBR to facilitate the focus group and the details of the evening are as follows:

Date: Thursday February 21, 2019

Time: 5:45 PM – 8:00 PM (Dinner will be available at 5:45 PM, the session will begin at 6:00 PM)

Location: ICP Main, Room 2178, Main Level

Thunder Bay Regional Health Sciences Centre

980 Oliver Road, Thunder Bay

Dr. Peeter Poldre (President of CPSO) and Dr. Nancy Whitmore (Registrar and CEO) will attend the first part of the evening with a short update on CPSO activities and an open discussion. To ensure the best quality feedback where you can give your honest thoughts and opinions, the second part of the evening will be a confidential strategic planning session facilitated by consulting firm OPTIMUS|SBR.

[Annette McKinnon]

Hi

This is similar to the focus group I attended, and I was dismayed that those running it did not stress the public participation aspect. By responding to a question about Board or Council representation of the public the person who answered (Peter Poldre I think) made it sound like an exclusive process where people were 'appointed' more in the sense of being plucked from the crowd rather then applying and being chosen.

Most of the public members I have seen are well qualified people in a variety of ways, but not patients except in the sense that we sometimes hear when people say "We're all patients"

Annette

[Kurtis Kitagawa]

Thank you, Carolyn,

I will give it a go.

Kurtis

[Kurtis Kitagawa]

Dear Carolyn,

Have now posted a new question for discussion relating to whether and how doctors and hospitals are accountable for their behaviour to patients.

Hope you will provide feedback or insights.

Thanks.

Kurtis

[Annette McKinnon]

I met Dr Gigi Osler at a conference. She's the President of the country-wide Canadian Medical association now, and she knows about PAN. I gave her our slide deck. She sounded very interested in having patients involved.

As for the CPSO there are ways to provide feedback on the consultations when you get into them.

I also attended a focus group for CPSO. One thing people are not so aware of is that the Regulatory Colleges of the health professionals are required to have patients on their Boards and Councils. In Ontario you join through the Public Appointments Secretariat. Then you have a real influence.

In my opinion public members are very seldom patients - it would do them good to have more of us who are patients and caregivers. There's usually a per diem for this and the educational opportunities are terrific.

Annette

[Kurtis Kitagawa]

Dear Kathy,

Thank you for your message. Here is the link to the page

http://patientadvisors.groupsite.com/discussion/topics/747260/messages

please let me know if this works.

the question I pose is: Are hospitals and doctors accountable to patients?

Please feel free to share your experiences or insights.

Thanks again

Kurtis

[Kathy Smith]

Hi Kurtis,

good for you for bravely trying new postings. I’m learning too. Where is your new question Kurtis?

[Alies Maybee]

Kurtis and others, is it useful to approach medical schools directly to see if they have patients involved? Alies

[Kurtis Kitagawa]

Dear Alies,

Thank you so much for your question. I am very new to all of this, but I am now connected with the Bruyere Research Institute (part of the Univ. of Ottawa medical school), so I will certainly explore this. It is unfortunate for everyone when the issue of accountability has to be raised at all, so hopefully it will be possible to get a dialogue going while doctors are still being trained to prevent unfortunate situations in the future.

Happy to hear other suggestions and would love to be involved in your patient generated data report.

Thanks again

Kurtis

[JoAnne Mosel]

Hi Kurtis,

Can you please explain how you are connected to the RI.. in what capacity? I once brought up the issue of accountability in a committee meeting and you'd think I'd just said I was telling them to commit a crime. I agree for the need to get to doctors in training. However, those who are training them, the ones with access and resources, seem to want to keep the doors shut. All the doors need to be open. Lack of accountability and lack of governance to do so.

[Rachel Cooper]

I do work with University of Toronto's Department of psychiatry and came to that work through a call-out for participants in a newsletter for service users/consumer/survivors. One of the things our network struggles with is connecting with new folks ("recruitment", to put it more formally), so this challenge is not surprising to me. As I've gotten more involved it's been helpful to find out what faculty members are doing what research and to try and align my vision for patient engagement in the department with research/activities that are already happening, and then to try and connect with those folks, usually through a mutual colleague making a connection.

I also try and do the same for any of my peers who similarly want to have their vision propelled forward.

Rachel

[JoAnne Mosel]

Yes Rachel, researchers are consumed with "recruitment". On the other hand, they do little to reach out IMO and there is no infrastructure to systematically match up or for patients prioritize research topics.

I often write to researchers to see whether they'd be interested in topics of relevance to me and other families but they either don't reply or it's No, sorry.

As you said, you got involved due to a call-out for participants. It's a one-way transaction. Needs to be two-way, with EASY access that shouldn't have to be a full time (unpaid) job. I know some are working at it, but not enough are on board.

[Kurtis Kitagawa]

Dear JoAnne,

I helped with the patient engagement part of methodology for a funding proposal with Bruyere Research Institute. That's my connection so far. If the research is funded, I will be more involved there.

In general terms, patient engagement and patient centred care are part of the accountability measures for accreditation with hospitals and health centres. But, of course, for some of these places, the motivation is just to tick off boxes saying we have X, Y, or Z covered. This is typical organizational behaviour (not just in the health care system). There are others who want to embody the spirit of patient centred care and strive to make the principles of patient centred care the hallmark of what they do. Influencing doctor education requires an institutional culture that actually understands and sees value in making the doctor patient relationship more collaborative and dynamic.

So that's the battle that has to be fought in the short and medium term.

There are no easy answers in this area--and that is definitely frustrating. What I have found in my own experience is that it can be helpful to be very involved in whatever ways you can and by being involved in that way you will have an opportunity to contribute to discussions that will lead to positive change.

As patients we have to be working collaboratively, even with people who only see patient involvement in tokenistic terms. You can't take this personally--it's just a feature of organizational behaviour. Change is possible, but it takes time, and, when you have "skin in the game", it requires a thick skin as well.

Don't know if my comments help. I am just sharing my very recent experience in this area and I am in it for the long haul.

Best

Kurtis

[Alies Maybee]

Kurtis, I have had some dealings with Simone Dahrouge at the Bruyere and find her to be very supportive of patient engagement. She is responsible for PERC, the Patient Engagement Research Centre funded by SPOR and targeted to primary care research although much of the material applies across the board. I don't know others at the Institute.

I think you are so right, we have to be involved where we can. Usually if I find I am the "token", it is not generally personal. It is usually ignorance about how to do PE or a reluctance to change not ill will. I have been in this since 2011 and have seen great and positive changes over time. There is still tons to do but at least there is progress.

I do try, not always successfully, to move the needle and open people up to collaborating with patients. Looking forward to meeting you some day. Alies

[JoAnne Mosel]

Thank you so much Kurtis! I think you articulated the issues beautifully.

I've been fortunate to have taken several courses in patient engagement wherein I'm interacting with like-minded individuals. But when it comes to practice, as you say, organizational behaviour is ingrained.IMO, it stifles real innovation and the drivers who have the resources, funding and political clout, are often not wiling to move on from the status quo.

If infra-structure for P/E were built within an organizational framework, systems could hopefully work together. Right now, I see silos springing up, dependent solely on the goodwill of interested parties, a slow and inefficient method to effect change. The time and resources required for minute increments of change feels like the dark ages.

Thanks again.