P x P: Patient Led Conference on patient engagement in research - Sept 10-12 2024

[Donna Rubenstein]

Patient Engagement inRe search Conference
The PxP (for patients, by patients ) conference will be held Sept 10–12th. This is a unique opportunity to learn and connect with patient partners from across Canada globally. It’s free and virtual so it’s easy to participate . Check it out

Full session details will be available soon. Topics will include:
• Power balance in patient engagement
• Building diversity and capacity in patient partners
• How to publish as (or with) patient partners
• Interactive ‘ask me anything’ sessions
• and much more!

Register here
Sign up here to receive news and updates on the program schedule

[Chris Johnston]

@Donna-Rubenstein Registered and looking forward to it :).

I wish Health Research BC would take a look at PXP’s conference approach and learn from it. Their so-called ‘Putting Patients First’ conference is exactly the opposite. And while they’ve finally added a livestream option, it’s a non-registration view-only link which allows for no participation whatsoever - no questions, no discussion, no polling, no networking. It’s beyond frustrating that as patients our taxes fund initiatives that exclude and dismiss us.

[Donna Rubenstein]

@Chris-Johnston arghh.. disappointed to hear that Chris- gap continues , room for learning and supporting PP and access in a tangible way... I hear the costs are a challenge and wonder if the demand and interest was stronger , whether a better solution would evolve.
PxP is leading the way ..their success provides a model for all health conferences ..

[Chris Johnston]

@Donna-Rubenstein Yes, costs are always a challenge, but patient partnership has been systematically downgraded and de-resourced in BC since the SPOR unit was absorbed into HRBC. The merger was sold under the promise of better use of resources and prioritizing patient partnership, instead funds are being channeled into a conference that most patients are excluded from through financial/health barriers to travel, and that’s being used as ‘evidence’ of lack of interest. It’s very much a self-fulfilling prophecy: make it impossible for people to participate and then use the low turnout to say there’s no interest.

[Donna Rubenstein]

@Chris-Johnston This is tough to read as many of us in smaller regions (maritimes) see BC as leading the way .. I guess it's all relative . Interestingly , here (maritimes) , we have observed shifting tides over the past year . It's like the engine slowed down , lost its steam and we are travelling on a different path . Most of the institutional leaders are not ready for full patient partnership - that said , our community voice is strong and growing ;i t is now harder to dismiss us. We cant let it wear us out . The windows of opportunity are there - we must keep our eyes open and pursue them when they surface...and keep challenging -

[Chris Johnston]

@Donna-Rubenstein Totally agree Donna! I’ve found more opportunities outside BC in the past few years, but I keep my eyes open and stay connected to other patient partners in BC I’ve met over the years. I sometimes wish there was a provincial chapter of PAN to help us coordinate our efforts, but we keep calm and carry on as best we can.