Patient Engagement in Medical Educatioin

[A Former User]

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

[A Former User]

Hi Kurtis,

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

[A Former User]

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

[A Former User]

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

[A Former User]

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.

[A Former User]

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

[A Former User]

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.

[A Former User]

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

[A Former User]

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

[A Former User]

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.