Survey is open through Friday, Dec. 20, 2013.
I’m playing a [modestly paid] role in a project produced by A.I.R., the American Institutes for Research, a Washington think-tank I crossed paths with last year through my work with Aligning Forces for Quality. Boy do we like each other! Very much think-alikes. Truthfully, it’s hard to figure out how to incorporate “just a plain old patient” voice into their work (“What do you pay for a thingie who has no master’s or PhD???”) but these guys are working on it, and I love it so I’m playing along.
A.I.R.’s Center for Patient & Consumer Engagement is producing a think-tanky white paper on where patient engagement should go, and, brilliantly, THEY WANT TO KNOW OUR OPINION ON IT! Of all things! So this is YOUR chance, your opportunity, you AND your friends. There’s no limit on how many responses they’ll accept. (The graphic at right is their concept a year ago of the dimensions of engaging patients, published last February in their article in the Health Affairs issue on patient engagement.)
To be clear: this survey is your chance to speak into a document that a lot of planners will read. It’s a simple 5-question survey, really open-ended, looking for YOUR experiences about what feels right or feels wrong, and what medicine can learn from it. The survey has no underlying academic assumptions about what patient engagement should be. They really want to know how we (you) see the issue.
Here’s a link to the survey itself – five questions, each with an open-ended text box. I’ll summarize them, because frankly I think what they’re after isn’t always clear in the survey itself. :-)
- Tell us about an incident where you felt your clinicians were, or were not, engaging with you as a partner.
(Don’t you love that they’re asking how you felt??) - If you could change anything about healthcare, what would it be? What would you do differently? What would clinicians do differently?
- In that ideal world, what role would patients have in changing policies and procedures?
(You might think about stories you’ve heard where patients are indeed management partners, but you can also dream up anything you want.) - What would a fully realized partnership between patients and provider organizations look like?
- What suggestions do you have for people designing patient engagement programs?
Yes, they’re asking for patients’ view of what’s important.
Here’s that link again to the survey. And please, invite anyone you know who cares about patients as partners: patient safety friends, data geeks, price shoppers, you name it. The more anecdotes we have (#1) the better, and the more diverse ideas they hear (#2-5), the better the brainstorming. As Bonnie Raitt sang (though in a different context), “Let’s give ’em somethin’ to talk about”!
This initiative and the players are American, all their experience is American, and the majority of it, in MARKETING.
What does this have to do with the Canadian healthcare system?
Who is funding you?
What on earth are you talking about? Who said Canadians are excluded?
I love that slide – I use it often in explaining different ways that patients can guide healthcare improvement work. I was shocked to realize how many people’s conception of patient engagement began and ended with the green row, or stopped before that final red box.
Yes, Ziva – in my experience the issue you describe comes from people’s training and point of view. Almost everyone I’ve met in the field (almost, not all!) says they were trained that their job is to understand a patient’s condition and do things *to* them, except for things the patient needs to do, to stick to the plan. Most say they weren’t trained at all in finding, developing, harnessing and utilizing the patient’s abilities or priorities.
Some I’ve known were trained in that but once it came to clinical practice their mentors and supervisors never brought it up; they never experienced being told, “Now wait, think – what’s the patient’s view?” Next time it comes up in your conversations you might ask whether people were trained in that.
So an important part of our work in this movement is to help awaken realizations about this.
(Did you go reply to the survey??)
I answered the survey, but just wanted to publicly post my thoughts on question 5.
“What suggestions do you have for people designing patient engagement programs?”
That engagement is a 2 way street; you need to be engaged if you want patients to be engaged. “Engagement” is not something you do to someone, it’s something you do WITH them. I hear people use the phrase “patient engagement” like it’s a banking transaction, like “engage patients with our message” is like “buy X stocks”. That’s not how it works.
Perfect, Alaina! Engage *with*.
I worked on a great engagement project called the ALOIS Community Project which aimed to engage carers of people with dementia – or anyone with an interst and an internet connection – by recruiting them as online research volunteers for the Cochrane Collaboration’s Dementia Review Group.
The idea was to test the feasibility of using this hands-on work experience to create an army knowledgeable and empowered carers, enthuiastic about getting involved in research, who can then more confidently engage with the clinicians and other healthcare professionals they come into contact with over the care of their loved one.
The project is not active at the moment, but I believe this approach has potential to work across other healthcare areas. So I agree very strongly with the previous comment from Alaina that engagement has to be a dialogue, and the conversation doesn’t have to be started by the healthcare professionals.
Thanks, Caroline – did you, like Alaina, do the survey?
Hi Caroline – I’m doing post-Christmas catch-up on this great discussion.
> engagement has to be a dialogue, and the conversation
> doesn’t have to be started by the healthcare professionals.
Exactly. Seems to me there’s no such thing as one-way engagement!
Re “doesn’t have to be started by the HCP” – indeed, in the Sixties I was taught (by activists) that step 1 of empowerment is to recognize a feeling inside yourself about what you want. They called it consciousness raising (a term that includes other awareness issues too). Step 2 is to start to speak up.
In my life I’ve seen some superb, intuitive caregivers who know what someone wants even if the person’s unable to express it. They’re magic. But none of us should sit back passively and put that burden on others – in my view we should speak up.
PS – there is a website for the project which is http://www.alois.cochrane.org
Dave, I did fill out the survey. And I shared it with the other patient partners in our system, and invited them to fill it out, as well. I hope that you get a strong response!
Thanks, Ziva! I know that the survey results have been harvested extensively and productively!
Hi Dave,
Thanks for this great article and insights.
I was trying to see the Survey by clicking on the links :
“Here’s a link to the survey itself” and “Here’s that link again” but not able to get those.
Can you please help me to provide the working Survey link?
Regards,
Harbir
As the post said in the first line, the survey closed a few weeks later.