By: Linda Wilhelm
The Canadian Institutes for Health Research generously provided travel awards that allowed for many of the patient partners engaged in The Strategy for Patient Oriented Research (SPOR) to attend the SPOR Summit in Ottawa from November 13-15, 2018. The venue was very accessible and as someone who lives with a disabling disease that limits my mobility and causes extreme fatigue having the hotel and conference center attached is extremely helpful. The opening reception meet and greet was a fantastic opportunity to network, meet new people and connect with those who we have collaborated with previously. The posters were an excellent showcase of the amazing reach and success of SPOR. Some of my patient colleagues’ collaborations were highlighted in the posters; Laurie Proulx on the Operating Room Black Box Project, Janet Gunderson with The Saskatchewan Support Unit on Grading Patient Engagement on a Grant Review and my own involvement with the Chronic Pain Network and their model of Patient Engagement. I know there were many more and to see the depth and breadth of patient engagement in SPOR is exciting and gratifying.
I really enjoyed the indigenous components of the Summit and can’t help but feel that conventional medicine could learn so much from their approach to health, community and promoting wellness. The “Sickboy” plenary was inspiring and engaging and I will definitely be watching their podcasts. Their key messages were:
- Life is too short for small talk, say what you feel.
- Your actions can change the world.
- Everyone has a story to tell was inspiring and set the tone for the rest of the summit.
The Training and Capacity session was interesting, I have been a collaborator on the Partners In Research webinar course and, it has been a great experience and is fantastic to see it shared in a panel session at the summit. I was on the panel for Patient Partner Perspectives on Engagement and Impact presenting on my role on the governance structure of the Chronic Pain and the Evidence Alliance Networks. Janet Gunderson was also on a panel presenting in the session Patient Engagement: Let Us Count the Ways, a fast-paced learning experience about many different SPOR projects and interesting to hear about the breadth and depth of the SPOR program. It is important, as patients involved in SPOR that we engage with other patients who are also involved and have an opportunity to share our experiences and models of engagement. On day two, I attended SPOR session on Action and Let’s Collaborate.
The summit program was excellent, there were so many interesting sessions that choosing which one to attend was a challenge. There was a discussion on creating a “SPOR” Patient Partner committee where patient partner representatives from the Networks and the Support Units could share their experiences, information and collaborations. Hopefully this idea goes forward – patient partners can learn much from each other and we have an obligation to mentor others and share the great work of SPOR.