I haven’t travelled by myself since my cancer diagnosis in February. I’m partially healed (at least physically) now that some time has passed I took the opportunity to attend a child health research conference in Toronto last week. I’ve felt exceedingly vulnerable and reliant on my husband these past few months and I was nervous about travelling solo. (Thankfully, I had many people in Toronto caring for me: I’m grateful to Beth, Frank, Donna, Yona and Kate for treating me to meals and their warm company in the evenings).
I’m on CHILD-BRIGHT’s Citizen Engagement Council and had my expenses paid to attend the Brain-Child-Partners Conference. For the first time in forever, I was at a health conference as a participant, not as a speaker.
I’ve stopped accepting speaking engagements altogether for many reasons: I’m trying to build up my courage again. I’m figuring out why I speak – my intention – am I speaking for healthy reasons, or just to feed my fragile ego? I’m also channelling all my depleted energy into my book project.
Being in Toronto as a participant gave me a new perspective on conferences. If I’m a speaker, I’m all wound up in myself with anxiety before my talk and then I’m hyperalert for feedback afterwards. This is both a distressing and exhilarating way to be. Because I’m thinking about me, me, me all the time, I don’t take the time to shut up and actually listen. Last week in Toronto, I finally simply sat and listened to what others had to say.
The Brain-Child-Partners Conference was unique in this way: there were at least a dozen family and young adult speakers sprinkled throughout the first two days of the conference. I had never seen such a variety of speakers, particularly at a research conference. CHILD-BRIGHT itself is a huge collection of projects that has engaged over 50 families and youth to guide their research.
This conference could have easily self-accredited to be a Patients Included conference with a few adjustments – offering a webinar option for those who couldn’t attend and having scholarships for patient/family attendees. Certainly the room was stacked with patients and families in the audience. Most conferences I’ve attended have had a lone token patient speaker (sometimes me) – which is not diverse or representative in any way. I never felt comfortable with that. When I’m speaking again, I’ve vowed not to take on any future engagements for conferences that aren’t Patients Included and who do not have a wide representation of speakers.
Here are snippets of what I learned when I finally shut and up and listened. Many of my insights came in the form of questions to think about.
1. Fix is a word I’m fixated on, admitted Jack Hourigan. She challenged the audience with the question: How do you feel about the idea of fixing our children’s brains? What followed was a thoughtful conversation about the point of therapies. Does intervention have to end for acceptance to begin?
2. I was struck on the reliance on ‘apps’ as a solution to health care problems. This reminded me of an experience I had at a Hacking Health event – sometimes the best solution is a human solution, not a technological one.
3. There was a lot of talk about the system needing fixing. We should never forget that we are all the system. The system is made up of people, and that’s us – both patients and researchers alike.
4. I wondered how the researchers felt about the balanced ratio of patients/families to researchers at the conference. I think of this as a quota situation: the patient and family voices have been excluded for health conferences for so long, it is time for some catch up. But one health administrator asked: well what about my voice? Is the inclusion of patients excluding others?
5. Cardiologist Ariane Marelli shared insight into her years of working with families who have children with congenital heart disease. What I’ve learned working in medicine is to help families manage uncertainty, she wisely said. There were many clinicians and researchers there who clearly cared compassionately for patients and their families.
6. If you want to know what youth thinks, just ask them, offered a young audience member named Jessica Geboers in a Youth Engagement Workshop. (Note: Jessica is a writer too – check out her perspective on the conference here). Sometimes the simplest solution is the hardest one to actualize. Just ask them. That’s a good mantra for patient-family engagement.
7. Jennifer Johannesen‘s talk deeply challenged the conference participants. She asked are patients valued by researchers only for symbolic reasons? For us patients and families, she offered, don’t allow flattery to prevent you from asking important questions. There was lots to chew on – the full text of her talk is here.
8. To me, this conference boiled down to: how can we each give up power to partner together? How do we create a sense of belonging for everybody? How do we ensure that everybody has a voice? How do patients not get overshadowed by caregivers?
9. Related to that is diversity – and despite having family representation, this group did not reflect the diversity that is present in a hospital waiting room. There was a lack of youth voice (having the conference on a weekday doesn’t help for school-aged youth). We were a homogenous group: mostly moms, university educated, upper end of the income bracket. As Jennifer Johannesen pointed out – whose place are we taking? We must make room for other voices, in innovate and creative ways. The most obvious solution to this is not expecting people to be able to take time away from their work/families to fly to Toronto to attend a conference. We must go to the people and not expect them to come to us.
10. Here’s a gentle reminder to all speakers. It is difficult to be both a scientist and an excellent communicator. I watched Dr. Christine Chambers’ exceptional talk about the It Doesn’t Have to Hurt Campaign. Christine herself is a rare and engaging speaker – she is funny and warm – but she also worked with a graphic designer to create her slide deck. I wish for all researchers to partner with communications folks to share their important information – and to ban the dreaded ‘reading bullet points off the slides’ approach. Or at the very least, I’d recommend reading Presentation Zen to pick up some tips about designing slides and delivering talks. Never forget the power of stories – audiences remember human stories, not data crammed onto a slide.
Finally, here’s my plea: If you are a health conference organizer, please seriously consider including patients and families as speakers and participants. As patient speaker Symon Hay said about the Brain-Child-Partners conference, this is the start of something new – where our voices matter. Embed diverse speakers in your program as opposed to offering a separate patient theme or segregated day.
True partnerships between patients and health care professionals will only happen if we see each other as human beings, not as titles or roles. This means being human at the point of care, in boardrooms and at health conferences too. This is a concept whose time has come.