National Forum on Patient Experience - Toronto Sep 24-25, 2018

[A Former User]

Anybody heard of this?

Coming to Toronto this fall, and quite pricey.

https://www.patientexperiencesummit.com/

[A Former User]

Take a look at the Discussion thread posted on July 17 by Claudia Hernandez under Education and Self-Learning topics. The title is:

"6th Annual National Forum on Patient Experience"

It's free for patients --but many of us have attended versions of this in the past. It seems to be more of a pyramid scheme by a company that puts on conferences for profit. They attract a few speaker acceptances and then build credibility on that. I've attended the "West" version in Vancouver and was very disappointed.

As Annette says in there remarks on Claudia's posting, once on their mailing list, it is hard to get off.

I would discourage providers in your circle from falling for the pricey registration.

[A Former User]

To present a different viewpoint ..... I have attended the Toronto version of this conference twice now .... once in 2015 and again in 2017. Of all the multi-day medical conferences I have attended (5 or 6 now), it is my favourite and I would highly recommend it to both patient volunteers, patient organizations and professionals.

They have a large list of highly polished rapid-fire speakers on a wide variety of topics, including many patients and also many notable organizations. The talks covered just the information I needed to know to learn what the topic was and what the implications are. I learned a ton and have found myself quoting the things I had learned non-stop ever since. Here are some of the topics that I found particularly enlightening:

- Sunnybrook had early experience with medically assisted dying and did a great session talking about the patient scenario, what Sunnybrook researched before getting involved, how they went about their first case and what they learned. A couple of key things I learned are that you have to be very aware in choosing your caregivers since some of them may have a moral problem with MAD and may not want to be involved. Also, families realized that they may want to be discreet about how the person died since other family members may take offense, and as a result it's hard to come up with the person to witness the medical papers. Sunnybrook helped by developing a list of volunteers who were willing to spend some time meeting the family and then provide the witness signature

- CBI did a project where the encouraged their PSW's to ask "I have 5 minutes extra before I leave today, is there anything extra I can do for you". They were scared they might be inundated with requests to repair the roof, wash all the windows, etc, but were pleasantly surprised that people just asked for help moving an item out of a corner or lifting the dogs food out to where the person could reach it, etc, and their customer satisfaction rating jumped many, many points. They also found out that many of their caregivers were already doing this on the QT since prior to the study, they would have been reprimanded for doing anything outside of the official list of PSW tasks

- a lady from a cancer organization in NY that assists LGBQT patients in getting cancer care showed an old by very insightful movie that showed us how difficult / gut wrenching it is for LGBQT people to get medical care because they never know if a provider will welcome them or insult them. The movie showed us an example of a terrible encounter and then replayed the same example where the provider was new to LGBQT but handled the situation beautifully.

- UHN and McMaster did a panel where a VP from each hospital talked about their work in patient engagement and then a patient advisor talked about one of the projects they had been involved in. The UHN patient was a young stroke survivor and she did a project called "teach back" where the physicians asked the patient to recap what they had learned in their appointment as the appointment closed. The lady said that this was huge for her, since one of her challenges as a stroke patient is that her short term memory is damaged.

- In 2015, there was a panel of early adopters of patient engagement who did 10 mins each on their projects. One that I have quoted over and over was a psych hospital in North Bay that started inviting the families to do a collage for their patients' room introducing the staff and volunteers to their patient. They later started doing the same via video and each time a patient arrived at the hospital, they would show the video in their staff meeting. It made the world of difference in the care .... for example, they learned that the "dirty old man" in room 123 who pinched the nurses backsides, was actually an Alzheimer's patient who had been an awesome father and community volunteer ... suddenly people started treating him like the awesome but ill person that he was. Another speaker talked about a project where they sent psych patients out into the community with disposable cameras to take photos of the things that had been most important to them before they moved into the care centre. Each of these told a story which the psych hospital published somehow (I can't remember how, and with permission of course) which created a very different impression of the hospital in the surrounding community

- in 2017 the hospital accreditation folks talked about a pilot they did where a patient participated in the accreditation review. It's a program they are hoping to expand, and I believe the patients are paid for their work.

- A gent from the Cleveland clinic talked about teamwork and mentoring among the doctors and residents an how they changed the game. This is so clearly needed from what I hear and the presentation was very insightful

Anyway, I'll stop there, but you can see that I really enjoyed all that I learned. Better still, the staff treated the patient attendees like gold, we ate awesome food, and met a ton of really interesting people. The conference fee for paid attendees may be high, but remember that they are covering the costs of all the folks like us who attended for free. And thankfully for us, they are willing to pay the fee .... maybe because they find it valuable to meet us!!

I also took note that in 2015, only a small number of the organizations attending were doing any sort of patient engagement but in 2017 I met many, many delegates who were the paid staff member in charge of patient engagement ... so clearly the landscape is changing.

Enjoy the day, everyone! .....N

[A Former User]

Nancy, this is such great news! I'm very pleased that you enjoyed the sessions so much, found the content helpful and worthwhile, and felt your time very well used.

One of my favourite expressions in this work is "Strength through Diversity", and your advice to others to consider the benefits over cost [$0] should be well-heeded.

Thanks for weighing in! That's what the PAN discussion forum is about. Sharing and learning.