Top 10 words to stop using?

[A Former User]

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

[A Former User]

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.

[A Former User]

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

[A Former User]

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

[A Former User]

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

[A Former User]

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

[A Former User]

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!

[A Former User]

Hi Everybody,

What a great topic - the continuing battle of the War of the Words! It seems to be an important topic too, as I've noticed in many a meeting when considerable time is given to discussing words, their meanings and implications. For instance, there is still much discussion around using the term "carer" or "caregiver" to describe the care given to a person in need of care, by a non-paid family member, or friend, or volunteer from a community organization, or any other person who is not providing care as part of their paid profession.

However, the vast majority of these meetings are attended by academics, clinicians, researchers, administrators, policy makers, and the like. And their goal is commendable: to be able to use terminology which will be understood in approximately the same way by all concerned.

On a personal note though, I have to say that in the last 6 years of facilitating family peer support groups with family members and other informal caregivers of young people with mental health concerns, and also working with youth in transition to community, no one is really that concerned with what words are best to use: like caregiver, or carer, or patient, or engagement, or collaboration, or shared decision making, family-focused, patient-centered, etc.

Instead, the words themselves are represented in the actions of those who need help or who give help, or both. Example, when a mom wants to know what the treatment protocol will be for her 16 year old daughter with bi-polar disorder, in order to be able to better care for her at home, she calls the case manager or doctor, asks for a meeting, so that she, her daughter, and treating team, can make the decision together about what is best - i.e. shared decision making.

I hope I haven't sounded "preachy" (yikes!) - I guess what I'm trying to say (with words :-)) is that Words do Matter, but actions matter more! At least on the ground, where it all counts.

I think it may be interesting to see how caregivers and patients identify themselves, in addition to what they do and what they experience. So I guess Stories Matter too.

Have a great day!

Mary Anne

p.s. Maybe some of you have already experienced this, but try to keep up with the terminology used by an 18 year old who is interested in receiving healthcare services for, say, anxiety-related issues.... so glad more peer mentors are coming on board to translate! lol

[A Former User]

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

[A Former User]

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.

[A Former User]

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