How-To: Include Patients in Healthcare Events Like #HIMSS16

Recent conversations with members of the Society for Participatory Medicine (#S4PM) have underscored the size of the gap that most of us industry insiders recognize, but very few have addressed: there is a dearth of representation by non-commercial healthcare system participants at healthcare events. In other words, the patients are not included.
Let me caveat here that when I use the term “patient” throughout this piece, it is only because writing patient/caregiver/health plan member/consumer each time I’m referencing those our industry is trying to “engage” is somewhat overwhelming. Please do not take offense at my chosen semantic approach.

The fact that patients aren’t universally, comprehensively, or even regularly included isn’t news. However, for each major event, there is at least one organization attempting to close the gap by organizing patient scholarship programs and offering patient-centric programming tracks. For HIMSS 2015, HISTalk held a contest and awarded 5 patient scholarships to the conference, which provided complete event registration and a $1,000 travel allotment. Health Datapalooza 2013–2015 had a Consumer Circle comprised entirely of patient and healthcare consumer advocates, whose conference registration fees were waived. Stanford MedicineX offers a patient scholarship program which offers reduced-cost or free conference registration. The upcoming International Society of Quality of Life Research annual conference is providing a patient engagement scholarship — only to those patients who have actively participated in the design and development of research studies.

But we are missing the inclusiveness mark by a mile. For most industry professionals attending or exhibiting at these types of events, the cost of attending — from the registration fees to the travel and expenses incurred along the way — is covered by our sponsoring organization, or (in the case of many speakers) by the event, itself. Also, because event attendance is considered part of our job description, we do not have to take time off from our jobs (paid or unpaid) in order to participate. Such is not the case for many patient participants. Dave de Bronkhart (e-Patient Dave) has written extensively about this phenomenon of asking those who can least afford the time and expense to participate for free, calling it, “Ratty Boxers Syndrome”.

I don’t know about you, but if my employer “invited” me to go to HIMSS, agreed to pay for my conference registration, and then “asked” me to write an article for them about the conference (and their generosity in sending me) after I had to give up 5 days of vacation and pay more than $1,500 in travel and expenses out-of-pocket, I’d tell them to shove it where the sun don’t shine. Why do we expect patients to be grateful to be minimally included when we treat them this way, if we include them at all?

So here’s what we, as an industry (and as industry insiders), can do about it:

1. Increase event registration fees by as little as $10 for all attendee classes, in order to fund comprehensive patient scholarship programs, which would provide registration, travel and expense allotment, and stipend for the time spent at the event. For HIMSS alone, with 40,000+ attendees, $10 per registration would equate to $400,000

2. Increase exhibitor fees by 10%, across the board. The larger the booth, the bigger the investment made in participant diversity and adequate representation by those we aim to serve

3. Provide free event livestreaming to healthcare systems and community service organizations, bringing access to a much broader reach of real-world patients

4. Individuals can be given the option, during registration, to donate airline miles and hotel points to a designated charitable organization for the express purpose of funding patient travel to events. PCORI, S4PM, RWJF, KFF, National Partnership for Women & Children — perhaps one or all of you could spearhead this program, with the resources required to administer the program paid for by grant or endowment dollars

Why aren’t we doing this already?

Until real-world patients from all walks of life are included, we are still only giving lip service to patient engagement.

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