Making the case for patient inclusion: A HIMSS odyssey

Caveat: I in no way mean to imply that my actions are solely, or even substantially, reasons for change. But change is coming, and I’m part of it!

Before HIMSS 2016, I couldn’t shake the thought: where were patients at healthcare events — and why weren’t we doing more to include them?

Since a number of brilliant patient advocates (looking at you, Casey Quinlan, Dave de Bronkart, Jess Jacobs, Carly Medosch) opened my eyes to the issues plaguing patient representation at healthcare events, I started speaking up at every opportunity — conference steering committee meetings, with my own marketing team, across social media platforms:

“Hey, I’ve got an idea, how about we put a patient on the main stage?”
“Hey, how about we use some of the marketing budget to bring a patient?”
“Hey, how about a patient participant for the roundtable?”

Now, I’m pretty loud, and persistent, but that doesn’t always translate into being heard: I was only marginally successful at affecting change. Still, early successes (particularly with my own organization’s events) gave me hope that this gap could be closed. So, I set my sights on including patients at HIMSS, the largest health IT conference in the world.

Go big or go home, right?

I wrote a quick post on easy, specifics steps individuals and organizations could take to facilitate inclusion. I was surprised by the response that post received — and thrilled when several vendor friends offered their unused exhibitor passes for patients. Free passes! We CAN include patients! Brilliant idea, right?

Spoiler: those vendor passes went unused at HIMSS. It was too little, too late, and too close to the event to figure out a workable process. But even though I wasn’t able to make that happen, surely, some of the more overtly “patient-centered” and “engaged” vendors would have a patients-included story to tell. I set out to find those progressive thinkers who didn’t just profess to value and engage patients.

I walked the exhibit hall floor, looking for booths with patient, caregiver, or consumer-engagement messaging, and I asked 31 of them: do you have any patients here? The response was inevitably some version of indirect “no”:

A few booth people got creative in their responses:

“Well, I’m a patient. Bob over there is a patient. Aren’t we all patients?”
“Have you been to the doctor more than once this year?”
“No…?”
“Then you’re not the kind of patient I’m looking for.”
I sometimes probed a bit deeper after the initial indirect no, asking:

Do you have a patient advisory council (or other group)?
Does a patient participate on your company’s board of directors, as a patient?
Do you have a designated patient experience executive?

Answers to those, more organizationally-focused, questions varied widely, and there were bright spots. For the ones that did have a patient advisory council, I asked why no one from that group was attending HIMSS. I spoke with VPs from 4 different companies who jotted down notes on including patients from their advisory council in their conference planning for next year. Given my own prior obliviousness to this dearth of patients at events, it shouldn’t have shocked me that so many executives told me this had not occurred to them.

My odyssey through the exhibit halls got even more interesting when I joined up with Carly Medosch and Mary Camp (who wrote about her HIMSS 2016 experience as a patient advocate on LinkedIn here). We approached a KLAS-leading patient engagement platform vendor’s booth, and after I’d received my expected indirect no to my “any patients here” question, Carly and Mary asked the company rep more probing questions I hadn’t considered:

Are patients involved in product design?
Are patients involved in your go-to-market strategy development?
He hemmed and hawed and hedged the questions by saying patients were involved in pilot programs, refining products before releasing them to market. But that wasn’t an answer. Carly wanted to know:

What is the earliest point you involve patients in product decision-making?
The answer was: after the product is developed.

“But that’s too late. Why not ask us how we want to engage before you build something to engage us?”

Exactly.

That experience on the show floor at HIMSS highlighted a flaw I’d had in my own pursuit of patient inclusion at events. I was trying to solve a problem I didn’t fully understand, in ways I couldn’t be sure would be the most helpful. I can posit solutions, but I am not a “patient”. To affect real change on behalf of patients, I needed to involve patients, at every step. So I called on the Society for Participatory Medicine and PCORI to ask for help from interested parties. I was overwhelmed by the enthusiastic response. And EUREKA! Progress!

Since HIMSS, we’ve collectively begun working with HIMSS leadership to establish reasonable goals, and align work needed with willing and available resources, for next year’s event. Beyond meeting the “Patients Included” conference charter clauses, I fully expect there to be a competition amongst exhibitors for positioning on the “Wall of Fame” for inclusion. Take note: we will gamify the hell out of inclusion, and all players will win.

The actionable inclusion framework we’re creating can be used for myriad events, going forward. After HIMSS 2017 (or potentially earlier pilot events), I also anticipate quantifiable proof that engaging and including patients in healthcare industry events and processes has an immediate ROI.

ROI. For the exhibitors, for the conference organizers, for the patients, themselves. No matter how frequently or how loudly we call for a solution to even the most obvious problem, if we don’t articulate “what’s in it for me,” nothing gets resolved.

ROI is what had been missing in my (loud, frequent, perhaps strident) requests.

No wonder I hadn’t been heard!

The ROI we anticipate through this inclusion process could translate into material patient presence on corporate boards, steering committees, advisory councils, product management focus groups, and beyond.

Reaching the tipping point of patient inclusion going from accepted practice to best practice *could* transform healthcare.

Photo: Wen Dombrowski

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