Help us evaluate conferences from the patient/caregiver perspective. SURVEY NOW on PAN WEBSITE

[A Former User]

Alies,

I would ask participants to describe what aspect of this conference really resonated positively with them.

Also the principles of patient engagement assume that a sense of inclusiveness, support, mutual respect, co-planning is present. If the conference includes small group discussion with a facilitator I think this is important to assess.

Lorraine

[A Former User]

Wow! Thoughtful feedback. We will take it all in and revise the survey with the hope to publish this on the website this week. Many thanks and keep those ideas coming! Alies

[A Former User]

I like the idea of putting the patients in touch. That could even be done in advance by email in the case of a really large conferencce.

I'm going to be part of a committee choosing patients for a conference too Virginia. The info for that will come out on Feb 9. They are connecting to Patients Included because they really want the designation - that proves it's working even though I doubt there will be more than .004% patients including the speakers and panelists.

Annette

[A Former User]

Virginia's suggestion about helping patients/carers connect up at conferences is excellent.

I've attended conferences where someone at the podium asks for a show of hands by role ("how many nurses in the audiences? students? researchers" etc). If they do say "patients?", those NOT in the know call out the tiresome "we're all patients" and everyone laughs with a scattering of hands raised. It's a confidence-killer for us.

When I witness this sort of thing, I speak up and ask, "If that were so, why is patient-centred care called 'improvement'? If all of you carry the patient view, why is your care so system-centric?".

But back to the questions. What would be a better way to help us identify each other and connect: "how many here are...
registered as patients or carers?"
patient leaders?" [if only more of us saw ourselves this way!!]
not healthcare professionals?"
not paid by healthcare?"
or something better? What's your suggestion?

It's good for conference organizers to identify us in the crowd, both for our own interest, but more so for the others in the room. YES! WE HAVE ARRIVED!

When I'm on my toes, I try to memorize faces and link up later. Sometimes that exposure also draws professionals into conversation with me. Great!

How wonderful it would be to have a designated meeting room for a patient and carer gathering point, also serving as that quiet respite room with decent seating, water to drink and a nearby toilet. Would quiet room and meet-up room be compatible? I would hope we are sensitive enough to make it so.

Other ideas? Who's been to a conference that did cater to patient attendees?

In the past the December IHI National Forum in Orlando identified a room for their 20 "patient advisors" who were specially invited with waived registration. That was out of a total of 5000 attendees! I campaigned unsuccessfully for years (as one of the 'chosen', only Canadian) to open it up for more patient attendance, since registration is well over US$1k + hotel + airfare. Pretty sad.

So that's one aspect of why developing PAN as a free network to build patient leadership is so important. We have so very much to learn from one another in this peer "community of practice".

Sorry to stray from the original thought. Thanks for your attention. Best regards to all. Carolyn

[A Former User]

The Masterslass by OSSU had all stakeholders present. There was a combination of individual sessions along with large group sessions involving all stakeholders. As a patient I was on the presentaion team with the research group. Very effective.

Other suggestions regarding feedback from patients:

Try to get a sense of the reach of the program - Who is taking it? ( I learned that many tend to be retired women who want to give back? Interesting statistic.)

Learning: Knowledge gained. Knowledge of objectives?

Has there been a behaviour change? Differences?? (change in knowledge, self efficacy, intentions in use of information

Was the conference valuable for participants?

Lorraine

[A Former User]

Annette

I am curious when you are choosing patients for scholarship to attend what guidelines are you using?

Virginia

[A Former User]

Hmmmm.... Very interesting. We would have to ask that of the organizers not the participants, however. I suspect the scholarships go to whom they know. Anyone else have an idea about this? Alies

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[A Former User]

When the BC Voices Network has selected patients to attend the annual Quality Forum in the past, they have made a point of not choosing people who have attended before. That's good, and not so good. On the one hand, it is great to offer the opportunity to as many individuals as possible. On the other hand, some people who will be developing a greater contribution in future years also need the support.

In these circumstances, some organizers will ask for letters of interest explaining why the patient wants to attend, what they wish to get out of it. The key to a successful outcome would be accurate expectations and a commitment to spread the knowledge to others.

One question I've always had is how much does it really cost to open the door to a few more patients. The marginal cost is catering only, as far as I can see. So the real cost is foregoing the income from a paying customer. For some organizations, the annual meeting is actually a fundraiser, well beyond covering the conference costs. In those cases, I really think the committee should think about what contribution they make to support patient involvement in healthcare, and conclude (of course!) that they could do something great by opening the door to eager patient learners and leaders.

Any help? Cheers, Carolyn

[A Former User]

Sorry, didn't proofread. That should be the BC Patient Voices Network (PVN).

[A Former User]

Good info, thanks. So of this can go into our end of year report too. Alies

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[A Former User]

For eHealth I have some answers to how the patients will be chosen, at least a lot of it. They will ask people to apply starting on Feb 9, and will ask for the answers to 3 question - Colleen McGavin and I worked together on the questions. Our starting point was the same Q's that Infoway used for the Partners Ponference.

It should not be too onerous because each answer can only be 100 words. The questions are about digital health.

I was being very conscious of potential conflict when I said that I would be part of the first 2 phases of the judging, but not the final one. However that seemed to leave just Colleen and one of the sponsors, so I volunteered to stay to the end of the judging.

When I judged for Infoway 2 years ago I had suggestions for the future. The ranking depended a lot on who did the judging - it might have been better with one more step. However I have no knowledge of how it went last year.

[A Former User]

Virginia, I like your idea about linking up with the Patients Included folks. I don't know any of them - do you have any ideas? Alies

[A Former User]

Our member Kimberley S is involved with Patients Included,

[A Former User]

Thanks everyone for the great feedback!! Wow!

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[A Former User]

I have heard that one conference gave buttons to each patient and caregiver attending so that they could identify each other. Can't remember the name of the conference, but what a great idea!

[A Former User]

I wasn't able to attend this year's Quality Forum in Vancouver. However, here's what they did to help out patient partners who were there.

They offered buttons to self-identify as patients. They hosted a breakfast meeting for patients to meet each other at the start of the conference. Fantastic to get acquainted before the confusion, intensity and rushing around gets going. Those who attended might offer more from their experiences at #QF18.

The Quality Forum is **Patients Included** thanks to the effort and investment of the organizers: the BC Patient Safety and Quality Council. Many of the plenary and a few breakout sessions were live streamed. I'm hoping to watch the videos when they are posted on the website.

Cheers, Carolyn

[A Former User]

I should add that the patient breakfast included the keynote speaker and great patient innovator from the UK, Tim Omer, also of #WeAreNotWaiting. How terrific to bring everyone together.

[A Former User]

Stanford MedicineX (back in the Patients Included, pre-Everyone Included era) used to have different coloured name tags for the ePatient Scholars (patients and caregivers).

The gold ePatient tags also provided access to a special patient seating area at the front of the Plenary Hall, and a separate VIP room for meals. Sitting together, eating together, and being able to find one another easily by way of the tags was super helpful.

[A Former User]

What great information, Kerri! I think we can include these as suggestions when we write the report at the end of the year. It would be so great to get organizers to think about some of these "best" practices. Alies

[A Former User]

Perhaps both pins and ribbons could be optional for patients, caregivers and members of the public. I am not sure only scholarship patients should be signalled out as there may be paying patients there too.

I agree about the "please stand" request especially if we are the only group to do so. It seems a bit like show and tell -- see how great we are to have permitted patients to attend!