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Posted by on May 23, 2018 in Bioethics, CRPS / RSD | 0 comments

Patients as “partners” (23.05.2018)

Patients as “partners” (23.05.2018)

When I first thought about attending the Canadian Pain Society (CPS) conference – or scientific meeting – all those months ago, I wasn’t certain what to expect.

I’ve been going to healthcare conferences & meetings for years, but as someone working in biomedical ethics (bioethics). As an insider. First as a bioethics student/trainee, then as a university-hospital research centre employee (in cancer epidemiology & population health).

Over the past 10 years, I’ve been to healthcare conferences as the manager of an independent research ethics board (REB; called an IRB or independent review board in the US), and then as a bioethics & patient privacy consultant.

Never as a an active patient, never with the goal of advocating for – of raising awareness of – a disease with which I’d been diagnosed.

So this would be different; I’d be attending the CPS conference as a CRPS patient, not as someone working in bioethics. I’d never been to a healthcare conference as a patient.

But last year, while I was at the Canadian Bioethics Society (CBS) annual conference (and live-tweeting it, so patients & others could follow!), I also followed the CPS conference on Twitter – as a chronic pain patient.

There were patients at the 2017 CPS meeting who seemed to be truly participating in the conference. Actively involved. I knew that was the first year of their “Patients Included” certification, so had questions about their 2018 scientific meeting…

Would that continue? Would patients really be welcome, again, in 2018? If I did attend, as a patient, would they ask me to do anything in return? I enjoy public speaking, conducting training sessions, doing presentations – but haven’t done any of these things from a patient perspective.

So I sent an email with some questions about patient attendance at CPS meetings, and a lovely woman named Lara replied. She made me feel welcome, that the CPS was very open to patient attendees. But that was only the registration phase; I wondered whether that attitude would continue at the actual meeting.

Well, I have my answers, and I’m more than impressed. When I got to the registration desk this morning, my nametag didn’t show only my name; it said “Patient Partner”. Then I was handed 2 silver ribbons, to attach to my nametag; one printed with the words “Patient Partner” and the other “Follow me on Twitter @________”.

I’d already – very happily – agreed to be part of the “Twitter Team” for the CPS scientific meeting, providing a patient perspective; one of several. Not only was the CPS welcoming patients (some with reduced registration rates, others with scholarships to attend from out of town), they also they wanted patients to share their own views of the conference.

A CPS 2018 nametag & patient ribbons

Image: Sandra Woods

Then, during the opening remarks of the meeting, the 2nd speaker was… a patient*. Sharing her own experience eloquently, through a poem she’d written. Speaking directly to all of the conference attendees, at the very start of the meeting.

The audience was primarily physicians, but also occupational & physical therapists, nurses, physician assistants, psychologists, researchers; any type of professional trying to help people in pain. And the other patients at the conference.

There was yet another surprise in store. During the first break of the conference, right after the opening remarks & keynote speech, patient attendees were invited to an informal meeting – with Dr. Fiona Campbell, President Elect of the CPS.

That Dr. Campbell chose to take time out of her beyond-busy schedule at this conference, to meet with patient attendees, speaks volumes. Her goal? To answer any questions we might have – as patients – about the conference, and to make us feel welcome.

She also shared with us the very personal reasons for her own interest in chronic pain medicine & treatment. She took the time to connect with us, with the patients attending the conference, at a personal level. And told us that both she & Dr. Christine Chambers, Chair of the Scientific Program Committee, were deeply committed to this remaining a “Patients Included” meeting.

And that set the tone for the rest of the day. Truly a “Patients included” conference, not simply a case of inviting a few patients – and then expecting them to sit quietly and just observe.

I’ll blog later, after the scientific meeting ends on Friday, about some of the sessions – including one on CRPS! Stay tuned.

Slide from #CanadianPain2018 about neuroethics & data use

Photo: Sandra Woods
Slide: Karen Davis, PhD, at #CanadianPain18

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* The patient-poet who spoke during the opening remarks of the conference was a surprise and a treat; she’s someone I’ve ‘known’ for a long time on Twitter – and was thrilled to finally meet in person today! IRL, for “in real life”, as we say on Twitter  😉

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