On May 17, SCPOR hosted its first conference which featured a presentation on the patient perspective, growing ideas into funded research, and Indigenous engagement in patient-oriented research. Nearly 200 attendees came to listen, network, and take in over 20 research posters describing Saskatchewan research that featured patient-oriented components. See below for pictures, news, and links to documents and presentations.
Left, Helen Kenyon, Executive Director of SCPOR, and Candace Skrapek, co-chair of the SCPOR Patient Advisory Council, conferring on their MC duties.
Simon says, “Do this!”
Share the Vision’s keynote speaker was Simon Denegri, National Director for Patients and the Public in Research at the National Institute for Health Research (NIHR), and Chair of INVOLVE – the national advisory group for the promotion and support of public involvement in research funded by NIHR. Simon was kind enough to meet with the SCPOR team the night before the event to talk about his experience in patient-oriented research. He encouraged us to think big, but start small. He emphasized that making a change to a patient-oriented research mindset involves leadership at all levels – top down, and bottom up. One of the biggest challenges his organization, he told us, was knowledge translation. “In the UK we do brilliant research but we’re appalling at doing (knowledge) translation,” he said. At INVOLVE, there is a program where policy makers spend time at public meetings and at the front lines to start addressing this gap.
Simon also spoke about a “Dragon’s Den” style event where researchers pitched an idea and patients were the “dragons” who critiqued the research and suggested alternative approaches. Evaluations from this event were very good – researchers all say they were able to refine and improve their ideas. For a 4 minute video on this, click here: https://www.youtube.com/watch?v=Znc8jd1YT1E
Blanketed in thanks – Indigenous Research & Engagement Platform Specialists Shane Keepness (left) and Kirstin Scansen-Isbister (right) present Simon Denegri with a blanket created by a local Indigenous artisan and purchased at the Waneskewin Gift Shop.
You can see Simon’s keynote address on youtube:
Saskatchewan Health Research Foundation (SHRF) Sprout Grants
SHRF is a SCPOR partner, and we were pleased to have Karen Glazebrook, Director of Funding Programs for SHRF, speak about Sprout grants. These grants combine support from both our organizations, with the goal of building capacity for patient-oriented research projects and fostering collaborations between academic researchers, health care practitioners, and health care decision-makers as well as patient and family advisors. To learn more, go to the SHRF website.
Images from the Event
Above left, Nirmal Sidhu, Research Analyst at the Saskatchewan Health Quality Council, takes in the poster presentations. Above right, Drs. Holly Graham and Marcella Ogenchuk stand in front of their poster, Exploring Oral Health in and with Indigenous Populations, which is looking at oral health needs in both the La Loche community and Thunderchild First Nations. This project plans on creating authentic community engagement in all stages of the research process. Other posters ranged from A Case for Interdisciplinary Pediatric Complex Pain Services in Saskatchewan, to A Community-Based Participatory Research Approach to Developing Rural Dementia Care Best Practices in Primary Health Care Teams. For a complete list of project posters at the event, click here.
Click below to see the PowerPoint presentations from the day:
Keynote Speaker Simon Denegri’s presentation: click here.
Candace Skrapek, patient advisor and Co-chair of the Patient Advisory Council, spoke on “POR 101”. As she said, “Being strong, brave, inspiring, and having a positive attitude does not cure my illness. Access to good and affordable healthcare does…this requires good research.” See her presentation on how to include patients in research in a meaningful way here.
Cassandra J. Opikokew Wajuntah, Indigenous Research & Engagement Expertise Platform Lead with SCPOR, spoke on Indigenous Research and the importance of approaching health research from a strength-based, rather than a deficit approach. Intrigued? See her presentation here.
Kate Dunn, Platform Facilitator with SCPOR, talked about the first SCPOR Program (Mental Health and Addictions) and how SCPOR supports patient-oriented research. See her presentation here.
Left, Kate Dunn presents on the SCPOR Program. Below, Simon Denegri meets with the SCPOR team the night before the conference for an informal conversation about his experiences in patient-oriented research in the UK.
From left to right, Simon Denegri, Shane Keepness, Janice Hobbs, Helen Kenyon, Jocelyn Ulvick, Kim Hill, Cassandra Opikokew Wajuntah, Gary Teare, Malori Keller, Kate Dunn and Tina Murdock.