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PIHCIN summer webinar series #3 - Shared screen with speaker view
Alies Maybee
Person Generated Health Data (PGHD) Principles: Through the Patients and Caregivers Lens
Alies Maybee
The report is on www.beasson.ca
Alies Maybee
Sorry www. beaccon.ca
Alies Maybee
PAN's website is www.patientadvisors.ca.
Donna Rubenstein
Hi Kylie- great so see you on this council! NS is well represented :)
Alies Maybee
Julie, too true. I have colleagues who found it very hard to get involved with SPOR.
Karen Moffat
It is about connections for sure
Taylor Hainstock
Sorry I sent this to panelists only the first time, oops! For patients and members of the public living in BC, check out www.reachbc.ca — “REACH BC is bridging the gap between the public and researchers. We make it easier for patients and the public to find out what health research is happening in BC, to connect with researchers and to participate.” *Health research opportunities for patient partners and patient participants.
Allison Ezzat
Here in the link to PREFer that Kent was mentioning! https://bmjopen.bmj.com/content/bmjopen/9/7/e025954.full.pdf
Alies Maybee
Colleen, yes. POR seems to be only for actual projects and not priorities. If funders are serious, they need to fund patient relationships and priority setting
Alies Maybee
It is important to have support and time to develop trusted relationships
Alies Maybee
Thanks to all for participating
Alies Maybee
Joanne, I think there is a difference between research and quality improvement. The QI projects tend to be more practical and require more design effort than research which is more inquiry based.
Alies Maybee
Denyse, a repository would be good especially if there was a place for patient partners to indicate their interests so matches can be made
Alies Maybee
Gayle, projects could benefit from a good internal communications plan. Even no news should be communicated
Taylor Hainstock
Here in BC, BC SUPPORT Unit regional centres have patient and public engagement specialists who help all research team members learn more about engagement :) we provide training (either formal CIHR SPOR National Curriculum) or ad hoc, depending on preferences and needs. We have a strong presence within BC universities/health authorities; providing ongoing support for researchers who might be new to venturing into the world of patient and public engagement. On Vancouver Island we provide funding (Team Assist grants) that are specifically focused on bringing folks together for coffee and meals (pre-covid, of course) to build relationships and explore opportunities to partner. We’re here to chat and support all ‘stakeholders’ in their patient engagement efforts :) (*I happen to be one of those patient-oriented research ‘matchmakers’ Rick is mentioning right now!)
Gillian Bartlett
a dating app
Gillian Bartlett
It has to be easy to use and easy to update your info
Alies Maybee
Patient initiated research - the PaCER program in U of Calagary trains patients and caregivers to do research
Alies Maybee
I have learned a great deal from other patient partners that have blown my understanding and my biaises
Alies Maybee
Agree with Lynne about bias in the political system