Thanks Michael. Will email her. K

Here's a link to a cautionary tale in the US where interoperable platforms and private companies with black box algorithms cause real harm to people in chronic pain.
https://www.wired.com/story/opioid-drug-addiction-algorithm-chronic-pain/

that's fabulous - bravo to you ! Please do share it, Donna

Troy, I have indeed seen it which is why I hope as many as can take up this opprtunity. You have described it and its importance well. Alies

Thanks Annette, it’s a wonderful team to work with. Appreciate your interest in this project.
Take care!

David is a very thoughtful patient leader from the UK and his work is worth reading. I have signed up for the Newsletter and look forward to it. I have also read his eBook - a great reference for patient partners seeking to have authentic engagements.

great to see this Alies; reflects a changing conversation about patient partners. gathering data also helps us see where the gaps are and move us towards broader-deeper representation of the larger community

Just read this well-crafted, easy to read, comprehend and relatable, website. With appreciation and a big thank you to everyone who collaborated, invested time, their best thinking, lived experiences and talents on building this much-needed, long-awaited and easy to follow site. It is "patient focused" , educates, informs with easy access, understandable terminology definitions, provides relatable examples and, is supported with numerous resources which engender confidence.

Encouraging "everyone" who receives/provides health care to invest their time to review the website, provide input, feedback and share "widely" with their networks. We have waited such a long time for this integrated very helpful assistance.
Thank you again. Denyse

Many thanks Sandra & Julia for your responses.
One suggestion for roll out I have is that all stakeholders, at some point i.e. the project sponsors, leaders, HEC, NHEN, etc.. AND patient partners participate "together" in sessions learning, discussing this initiative. Whether in webinars or group meetings, "acting" as partners from the roll-out outset has many advantages: sharing, discussing various stakeholder toolkit perceptions will break down perceived barriers, gaps that we know currently exist between partners. It would level assumptions and simplify the communication playing field, making it clear to patients how they can best contribute and employ their value while equipping sponsors, leaders, with more insights into patients' circumstances and their real underlying wants and needs.

Including both partners in a rollout, will facilitate discussions on toolkit use, reveal perceived benefits, concerns which can be explored. Mutual understanding will promote their ideas for any modifications as necessary. Following this, in the toolkit application, the partners will discover what works well, what needs adjusting while experiencing the benefits and improvement outcomes. They will also identify ways for using the toolkit which will enable continuous learning and improvements. Maybe most importantly, this partnership in toolkit utilization will lead to more effective, productive, meaningful work, partners' satisfaction and ultimately, health care system improvements.
Again, thank you.
Denyse

Thanks Alies, will await the Newsletter. Best wishes to you and PAN members in 2022. Let's keep the momentum going!

Many thanks Annette for sharing this Health Research-Road Map.... I took the tour , finding the visual very helpful, along with the ability to click on points to learn more..... Believe this will be a tool patient and health care should review and work with and on "TOGETHER"...we can only benefit by building better realtionships i.e. closer ties and trust , an essential ingredient for relationships. Provided input to the survey which accompanied the map and look forward to being apprised, up-dated on future iterations. Appreciate your involvement on this project. Denyse

John, thanks for the article detailing what you have been and are doing in BC.
I agree that we all need to learn how to be better and more knowledgeable patients and caregivers, I certainly do.

Hi Rita,
Perhaps there is material here, I’ll also look in my files.

https://ontariocaregiver.ca

Happy to see the ideas and I noticed a research abstract today that I thought was interesting in this context. I liked the way they listed the processes that were helpful.

Sykes, S.; Wills, J.; Popple, K.The role of community development in building critical health literacy
Community Development Journal Oct 2018;53(4):751-7672018 Oct
DOI:10.1093/cdj/bsx019
There is growing international interest in health literacy and the processes by which it can be developed. Critical health literacy, one of the domains of health literacy, shows an affinity with the goals and processes of community development. Critical health literacy represents a cognitive and personal skill set that exists at either individual or community level and which is oriented towards social and political action on factors affecting health.

This article examines the relationship between critical health literacy and community development. Using an illustrative case study it explores the extent to which community development processes were used by a project to build critical health literacy amongst vulnerable populations and communities.

The case study demonstrates that in working to build the different elements of critical health literacy processes were used that were typical of community development. These processes included building self-efficacy and self-esteem, participatory and mutual learning techniques, acquisition of technical, practical and emancipatory knowledge, democratic processes of collective decision making, critical questioning, critical awareness raising and conscientization.

The article argues for community development to embrace and advance the concept of critical health literacy in order that; its potential to address inequalities in health can be achieved and to create an opportunity to embed community development more fully within health policy and practice.

Annette

Zoom live transcribe relies on AI, so it's not perfect. I believe they use Otter AI to generate the automatic captioning.

The only way to have accuracy is to pay an human via CART (captioning with a human present at the keyboard) and hook that up to MS Teams or Zoom or what have you.

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

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/

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

Great resource! Will find it very useful.

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.

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.

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.

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

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

Check out The COVID-19 Global Rheumatology Alliance. There may be some long Covid resources. 

Thanks for this Annette.<br><br>There are many great analogies that help with this... especially when it comes to timing and how long some things take before an obvious result or change is noticed.<br><br>One that I use a lot with researchers, innovators, patients, and other stakeholders is gardening or growing plants.<br><br>Sometimes the skill and action first are to plant the seeds.<br>Where you plant and how you plant it does matter (just like which tables do patient voices sit at or present at)<br>Then you have to water it and help support its growth, whether with fertilizer, more light and sun, netting from the unwanted bugs and birds, etc.<br>And one day with some work and possibly some luck, it will come to fruition and then you can harvest.<br><br>Many days we forget that all we need to do is simply water, add fertilizer and nutrients every so often, and allow time for the plant to grow. I can't force a tomato plant to flower and pop out a tomato in 1-week... but I can nurture it to have the highest chance of success.<br><br>Many days, we just need to keep chopping wood until we need it or when others need it.<br><br>Thanks again Annette for this.

@Annette-McKinnon The Survey is closed.

Hi Jeanette
If you go to EvidenceAlliance.ca and click on their menu you will find it under the heading Submit a Query. Maybe urls are a bug right now?

I hope that helps.

Annette

@Jeanette-Smith
[https://sporevidencealliance.ca/submit-a-request/suggest-a-health-topic-for-research-en/](link url)

Delighted to hear this latest development!

I am touched that her generosity will have echoes into the future of healthcare and patient engagement.

@Annette-McKinnon we could consider doing a commentary on the numbers from our point of view. Thoughts?