Hi Sandra,
Glad you enjoyed your SPOR project.

Digital Storytelling can be an important way for patients to share their experiences.

The program that I was in, provided by a SPOR team, did not provide any forms for permission to release as far as 3 weeks into the project, and I dropped out, as I mentioned in my original post.

Creating standards so that patient partners have knowledge, control, and signed consent about disclosing their personal private healthcare information at the outset of a partnership, whether it is for research or for a workshop to create digital narratives which may be used by that SPOR team, is the item of concern here.

Best regards,
...Susan

I have just heard back from HEC and they said the best email for patient partners is at: Patient Partnership - Partenariat avec les Patients patientpartnership-partenariat@hec-esc.ca.

I would love to participate however the two dates they noted I AM OUT OF province.

Kirk

Thanks, Alies!! These videos made my day...sadly, the satire hits it right on the head. Let's all be a Larry!!

Good for you. Several (many) years ago I was helped write plain language summaries of research apps. PLS summary of the entire project is a big deal. I find good summaries on news feeds such as Medscape and Healio. I think they are meant for the average citizen, but I think they are still written at a level that one needs to have a fairly good grip on medical terminology, research process etc. I find most of the time when I want to read the original research it is NOT open access, so just get the abstract.

Ramona and anyone else who is interested, please contact Joanna.burke-bajaj@hec-esc.ca directly. Love to know how it turns out.

Thanks, Jeanne for those resources. I look forward to spending some time reviewing the information.
Speaking of Fraser Health, I just reviewed a panel discussion from last year's HeartLife Foundation education day that featured a palliative care nurse from Fraser looking at advanced care planning. It was very helpful and gave me some exposure to what they are doing.

Sorry
Info here
https://www.lakeheadu.ca/about/news-and-events/news/archive/2022/node/69726
Register here:
www.woundscanada2022.ca/en/registration

This podcast, not just the one Amy and I did, but more generally, covers such an important topic - dying!

We are not good at talking about it in our country but it happens to us all and we should. I do love Sandy and Hsien's perspective on this and their commitment to not only talking about it but making this final journey a better one for their patients.

Do take a look at it.

They are funding 10 Patient queries this year and starting to promote it vigourously next month. Hope you all have your thinking caps on.

Annette I did. It get the application form fir this PPWG

Great resource! Will find it very useful.

Extremely heartening to see this initiative created and moving forward. Struggles are showcased in local and national social media groups and it's important the public know they are being heard. Will share! Thank you so much for your hard work!

Congrats! I think we all should announce (brag) about the work that we do that we feel is impactful to improving healthcare for people. So, yay!

I found this to be of real value. Dawn and others have done a lot of leg work, research and this is of value to bring forward to our own HA>
Thank you,
John

Yes Linda here is the link https://twitter.com/i/communities/1510363320611655684

The sessions for this season have already been recorded and the other sessions that PAN Board members participated on should be available soon. There are over 37 sessions available now.

https://www.waitingroomrevolution.com/

John - Many thanks for your response and sharing your BC experiences. Would like to follow up on this more as we learn MUCH from others' experiences and thinking. I will be back to you next week. In meantime, if other PAN members are interested in pursuing more effective partnering working with HC colleagues, please be in touch.
Thanks - Denyse Lynch

My pass is virtual only. I would be very surprised if my pass covered expenses to The Netherlands. But that would be great as I have fao& friends there.

Kathleen, our focus is to build the team across Canada not just ON but all comers are welcome. You will be hearing back from either myself or Munira soon as we gather up those who have responded. Likely we will schedule an introductory meeting to start, then a formal orientation and from there, you will join the group. Thanks for your interest!