Thanks Annette - have signed up
Best, Denyse

Good to be cautious, I quite agree! There are plenty of examples of the patient-partnership version of "astro-turf" that I got to know as vexatious for genuine grassroots environmental groups decades ago. "Follow the money" is usually a good rule, but many websites have no such disclosure. Best wishes!

Another great UK-originated group is the James Lind Alliance that strives to identify research priorities set by stakeholders INCLUDING authentic patient and caregiver voices. Their plain language efforts are admirable.

A third group here in Canada is the McMaster Health Forum (mcmasterforum.org) that has decades of experience now in building "citizen briefs" as advance evidence background for "ordinary" citizens who wish to contribute to better healthcare and social services. Take a look at the citizen briefs from the past [HERE](https://www.mcmasterforum.org/find-evidence/products?ProductTypes=Citizen brief;).

Those are all examples of good use of plain language. But I think you are looking for some guidelines? Here is a start...

Try exploring this terrific website addressing health literacy from the NHS in England.
http://www.healthliteracyplace.org.uk/tools-and-techniques/techniques/use-simple-language/

Here is a short list of plain language tools for healthcare from the USA.
https://www.plainlanguage.gov/resources/content-types/healthcare/
Here is a bibliography of plain language resource materials from the USA.
https://www.imiaweb.org/uploads/docs/HLI_Resources_Guide.pdf

Here is a short list of tools recommended by the US Centre for Disease Control.
https://www.cdc.gov/healthliteracy/developmaterials/plainlanguage.html
Here is a Tip Sheet from Australia you might find useful. [www.rch.org.au/uploadedFiles/Main/Content/ethics/Writing Tips.pdf](https://www.rch.org.au/uploadedFiles/Main/Content/ethics/Writing Tips.pdf)

Thank you! I have registered - I enjoyed the last one.

David is a very experienced patient partner and leader so this should be well worth the investment of time.

It is also, I think, a very good example of how to structure a course of this nature. I might well take it again as there is a need to re-qualify. I presume this means it gets updated regularly.

As of today, April 29, three lectures are posted. I hope you find these talks to be interesting. The format is generally a half hour talk followed by a half hour of questions. Watching these talks gives me a healthier perspective on my own feelings of uncertainty, an uncomfortable place where we all find ourselves. Also, reflecting on this background is helpful for my patient partnerships. Happy learning! Best wishes to you. Stay safe.

Hi Larry,

I would love to read the article when completed.

Hope you can share.

Virginia

Thanks Carolyn - the Therapeutics orgs look very interesting, I'll give them a proper look-see later - though, to be honest, this was a red flag:

"... It's attended by 200+ primary care practitioners, pharmacists, researchers and students mostly from BC...."

I can't help but automatically think that the people most affected by medicines are not invited...except as an after thought for a chosen few, with no animosity toward you, it is awesome you got yourself in the room to give patients a face and voice.

I've been involved in HIV research for a long time and am particularly sensitive to how patients are the last, if at all, to be considered. Yeah, there are recent efforts to engage patients, but it is a big problem embedded in the institutions, and they don't change culture quickly or easily.

I do have concerns about Choosing Wisely as it relates to the 3 complex, chronic, marginalized illnesses I'm involved with -- the vast majority of physicians (like 99%) are uneducated about these very common 3 illnesses (yet they account for over 1 million Canadians according to 2016 CCHS) -- most often, physicians attribute our physical symptoms to psychological factors.

Setting aside gaslighting and causing trauma and medical PTSD and death, our patients are then prescribed psych meds, and denied any further biomedical testing, or access to any symptom treatments (coz symptoms 'all in your head').

The good about Choosing Wisely:

- our patients won't be given unnecessary and potentially permanently harmful psych drugs (for eg, Post SSRI Sexual Dysfunction, akathasia, etc) and other testing / treatment

The not so good about Choosing Wisely:

- our patients won't get access to symptom testing and treatments (there are no clinically used biomarkers or evidenced based treatments for the illnesses themselves .... because they receive virtually zero CIHR research funding)

- our patients won't get access to off-label medications for symptom treatment (like low dose naltrexone, thyroid meds, pain meds, etc)

- collectively, the Choosing Wisely campaign / approach may further embed medical discrimination and medical errors on our patient groups

So you can see why our patient communities have trepidation about Choosing Wisely:

When you're living with a disease that is already medically marginalized, and patients routinely dismissed and misdiagnosed causing physical and psychological iatrogenic harm, to hear that the little bit of appropriate testing and treatment we occasionally receive will be further restricted, takes away hope and faith in the medical system.

As is often said in our community:

"I wish they would stop calling us patients. It implies we receive medical care."

Any way, enough of my rant...thanks for the info Carolyn, have a good day.

Scott

Terrific to hear this. Many thanks for the update and "everyone's support" of this. We cannot but make improvements when knowledge, research is widely shared and understood.

Best, Denyse

Hi Claudia

Partners in Research is a course funded by research dollars from the Ontario SPOR Support Unit. It was offered by St Michael's Hospital Li Ka Shing Institute

I have heard that it will be offered again across the country but I have no facts.

Annette

Thanks for this Annette