Words to live by!

I have experienced so many "wrong" words and choose to educate on what the "right" word is (or are). Of course, I am no expert and do not presume to suggest how to identify others but do support that if you are unsure of the term to use, ask me, I'll give you my 5 cents worth.

During the early days of my advocacy work, I focused on joining policy tables, and it seemed to me that most of the work I was doing was changing their language. I was also educating them plus it increased my own learning. Since then, I am often invited to participate at the onset of these policy tables and not only has the language in the final version a vast improvement, but having this conversation at the table has had a direct effect on the care that is provided.

Finally, I don't believe there are many wrong words, people use what they are familiar with and its up to us to help them find a new language.

Not sure if this has been mentioned previously, but there is also another site doing similar called Open Access Button: https://openaccessbutton.org

Another example of the terminology confusion. The descriptor for the paid (professional or lay) care navigator role for private patients seems to frequently include the term "private patient advisor." Given the giant expanse of the health care domain, advising goes in every direction, from people wearing all hats to people wearing all hats, at any number of individual and organizational points of connection. No wonder there is confusion.

https://beta.theglobeandmail.com/news/national/consultants-are-helping-the-sick-navigate-canadas-health-care-system/article34714551/?ref=http://www.theglobeandmail.com&click=sf_globefb&service=mobile

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Did you look closely at their chart? I was especially intrigued by the 27/7 coverage and the immunications.

They also manage to find terms I do not know for some of the columns

Annette

I also have signed up .

Well worth reading. I tweeted the link if that's OK

All the best on your aplication to be Chair, Claude. I applied to be a member, so will see what happens.

At my local hospital they seemed to be adament that I should be a community member.

Being on the Health Quality Ontario list of possible volunteers gives me lots of opportunity to have input into initiatives (with no compensation). On the plus side I have a better idea of issues in the province through doing that.

The part of being an advisor that I enjoy is taking what I learn from various areas and organizations and putting them together. Since I don't have a specific focus I can concentrate what I like.

I don't know a whole lot about this but here are some thoughts.

It used to be that the government developed drugs then it was taken over by the drug companies. To be fair, some of the companies will underwrite expensive drugs on a case by case basis.

As we saw last year, the drug companies can charge whatever they wish. There is no stopping them unless we regulate the costs and/or buy in bulk.

Personally, I think it would be great if this was handled by the government. Perhaps farming out the research to the universities as is done now by the drug companies.

Also found a course:

Research and the Lived Experience Pre-Program Learner Assessment The pre-program learner assessment is an online survey which asks you to rate your current comfort level with the topics covered in the Program. 2 Module #1: Collaborative Research The first of eight e-learning activities in the Program. This module introduces the idea of "collaborative research" and explores why it is an important concept for carers or people with lived experience interested in becoming involved in research activities. 3 Module #2: Effective Team Work This module will introduce the idea of team work in research activities. 4 Module #3: Conflict Management and Resolution This module will discuss interpersonal conflict in the context of the research team. We will explore what creates conflict, what sustains it, and what can resolve it. 5 Module #4: A Personal Policy for Collaborative Research In this module you will create your own personal policy of collaboration: a personal guide as you journey into the world of research. 6 Module #5: The Basics of Quantitative Research This module provides an introduction to the research process and explores one of the major methodologies used: quantitative research. 7 Module #6: Qualitative Research and Other Approaches This module introduces the other major category of research methodology - qualitative research - and explores some other approaches to the research process. 8 Module #7: Ethics and the World of Academic Publishing This module examines the concept of ethics in research and discusses the funding and publishing processes and how they impact research. 9 Module #8: Knowledge Translation This final module discusses the process of getting research findings into policy or clinical practice. 10 Post-Program Learner Assessment Now that you have completed the learning program, you will be asked to again reflect on your confort level with the topics that were explored. This assessment can help you develop a plan for future learning in the area of research participation.

https://lived.mycpd.ca/course/about_program/structure.asp