Top 10 words to stop using?

[Angela Morin]

Thought some of you might be interested in the Society for Participatory Medicine's Top Ten list for words that we should stop using or limit use of with patients and/or families. Do you agree?

1.Patient Engagement

2. Patient Journey

3. Patient Centred

4. Co-Create

Rest of the list is here: https://participatorymedicine.org/epatients/2018/01/the-power-of-words-in-healthcare-a-patient-friendly-lexicon-top-10-list-wordsdomatter-project.html

They are looking for feedback on the project!

Looking forward to your thoughts! Angela

[Annette McKinnon]

Why don't we look for the top 10 replacement words (or even 2 pr 3) that we would like to see used in patient engagement.

Some of the 10 choices surprised me.

Annette

[Jeanne Bank]

Good idea - you are right Annette - I was surprised and it gave me pause for thought about potential alternatives - however, for some, I don't think we are going to be able to shift the language. For example, we now use carer instead of caregiver, but I am not sure that carer addresses the example in the article.

[Annette McKinnon]

I've heard people talking more about 'care partners' lately, instead of caregivers.

Still I agree with you about shifting the language. There are only so many words to refer to patients and the people who care for them, and the hospitals have taken some of the phrases we might use and turned them into job designations. Now we have patient engagement, patient experience and patient relations officers, and lately I've seen talk about further professionalizing the categories.

Pretty soon they'll have professionalized us patients right out of the equation. I like the term Carolyn uses - 'independent citizen-patient'

Annette

[Lorraine Bayliss]

Investing in Patients - start with the end in mind/personal priorities. What is the greatest presenting challenge you currently face? Then plot/plan the journey with stakeholders to reach this defined goal/outcome articulated by patients.

I am a great believer in backward design - start with the end in mind and then plan the journey with all stakeholders to get to the end goal. It is much more motivating than current practice. The goals are:

Specific

Measureable

Achievable

Replicated (in other settings)

Time Bound.

Lorraine Bayliss

[Virginia McIntyre]

Lorraine, we often use the SMART goal setting tools and is effective.

But I think we are going down an interesting road here. How do we get everyone on board with new vocabulary? It wasn't that long ago the chatter was about not even calling us patients but clients.

I like independent citizen-patient but is it getting a little long. Terminology isn't going to stress the importance of having us in the conversation but must be careful don't want to confuse anyone

Virginia

[Lorraine Bayliss]

Great suggestion. Finding a pathway to co-creating/co-designing in an environment that is mutually helpful and beneficial is a goal worth pursuing.

Lorraine Bayliss

[Laurie Proulx]

I personally am a big advocate for co-design / co-create as this seems like the ultimate form of patient engagement. I think maybe we should work on defining the words instead of concerning ourselves with the words. Maybe that would be a better place to start!

[Angela Morin]

I love this from Mary Anne on the topic of language.."Words do Matter, but actions matter more!" I wholeheartedly agree. Different words mean different things to people based on their experience, background, perspective. As patient advisors, perhaps WE need to define what they mean to us WITH the people we are engaging with at that moment in time. Perhaps there is not a one size fits all and in the spirit of co-design (I agree with Laurie that co-design is ultimate form of patient engagement) we need to continuously have the discussion about what the words mean in deed and action in the work being done at that moment, in that project, at that organization.

Happy Monday! Angela

[JoAnne Mosel]

I agree wholeheartedly with the comments above...actions are important, define the words.I personally do not like most of the 10 words. Words like co-creator or "co" anything denote both parties are amenable. We're not there yet.The words identify a person as the disease or the role they are playing ( ex coordinating or carrying out tasks to fulfill needs of another.) Hear it often enough, and the person begins to believe that is ALL they are. The term "patient engagement"..does it send shudders up the spine of other stakeholders? If yes, then I think it's not a good term.

[Bill Holling]

The old saying talk is cheap gets truer every day. Having sat through hours and hours of meeting at various level of health care ,I realized we have answers to a lot of the issues facing healthcare . I will admit one item appears to be money but it is not as big a problem as we make it. The big problem is WORDS presented but lacking people to institute changes required to use those words. AS patient advisors we run the risk of being called rebels ( or much worse) but we have the freedom to call a spade a spade but not every person around the table can be open without fear of retribution.

My point is we have a lot of answers to our problems unfortunately a lot of them are not popular answers to the burocasy some of them put their silo at risk. We could get a lot done if we could overcome the fear factor and take the WORDS and change them to ACTION