Hi, I'm a patient: Talk to me!

Today I participated in two completely different phone calls, for different reasons, different organizations, but both related to asthma and patient engagement in the asthma community. It’s no secret that I believe the way to change healthcare, change experience, change outcomes is to—hold on, wait for it—talk to the recipient, the end user, the…


It’s not a novel concept.

And unfortunately, neither is the prototype my patient peers and I were asked to provide feedback on this morning. In fact, here’s the thing with asthma: everybody is trying to reinvent the wheel. And I mean everybody: from doctors at big research universities to indie app developers, to the multiple other organizations who may improve what was once a novel concept and make it a little bit better, and, yup, even the pharmaceutical industry and health charities. After they are partway through reinventing the wheel, they’re like “Okay, let’s bring some patients in now."

And I’m sick of being an afterthought. Even if I am being compensated—actually, especially if I am being compensated—I should not be an afterthought! If a project has money to compensate patients for their opinions and time, as they should be, then they should be using those funds in that fashion from step one.

Last week, I was on a call where Michael Kariwo, Project Coordinator of a social support asthma research study at the University of Alberta said, “If you talk to the people, they will actually give you the solution."

Okay, I’m going to repeat myself because I actually wrote that down, that’s how much this man gets it:

“If you talk to the people, they will actually give you the solution."


Let’s go back to the IDEO method, okay? Let’s go to asking the people to generate as many solutions as possible. Let’s pick the one that the patients, the people think will work best. Let’s spend money more efficiently and pay patient consultants earlier on. Let’s not spend a ton of money on research and development and THEN do a re-research and re-research phase after we’ve finally consulted the patient?

Where should the patient be involved in the solution-building process?


Because guess what? We HAVE the solutions because we KNOW what the problems are, first hand. We know where the gaps are that are tripping us up. We know that making any solution any more cumbersome is not the effective way to do it. We know that—unless, perhaps, there is some sort of actual incentive to respond, and that is often after awhile beyond maintaining our health—if you add any more alerts or processes or steps into our lives we are just going to burn out on notification fatigue once the novelty of a new app wears off, or, legitimately, even burn out on using the data that is generated automatically (that’s my word for automated and magically… AKA without any user interaction—like how my phone brightness now automatically changes when I leave my house).

Maybe we don’t know how to solve for those problems. But we can tell you they exist and you, the person with the fancy degrees and R&D teams and funds (or lack-there-of in some cases!) can build a solution that we have co-created.

It’s not co-creation if the patient is consulted only after the idea is nearly half-baked. It’s getting “feedback”, but there is no guarantee to us that you will use any of our feedback. Feedback is essentially an opinion based on reaction. Feedback is not proactive: patient engagement is.

Hi, I’m a patient: Talk to me!

I promise, even if I tell you your idea is nothing novel, I’m only 5”2’ and I’m really not scary.

Except I do not want to be an afterthought.

Because I can and WILL actually give you the solution.

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