Conferences: The Patients Included Movement
I love conferences—I love hearing about new research, connecting with new people who have common interests to me, and hearing perspectives different from my own—after all, that’s how we learn stuff. Patients being included in medical conferences is by no means a new trend, nor is it one that has been mastered. I understand that there are absolutely difficulties in involving patients in medical conferences. But does that mean that it should not be done? No, of course not. This is why the Patients Included Charter for Conferences exists—so that when something can be done, changed to better include patients, that it is easy to provide feedback to make it so for the next round.
It is not difficult to be a Patients Included event
I’ve been to medical conferences that have done patient inclusion extremely well, medical/health conferences that have done it less successfully, and ones that have fallen in between—and even ones that I have participated in multiple times that have flipped flopped in their efficacy in delivering a patients included or patient-centered event between years. In my opinion, it is not difficult to be a Patients Included event—especially as the criteria is readily available online and that the status is self-determined and self-appointed: if your event matches the criteria, you’re good to go, and you can put the logo on things and look awesome!
I know that these things do not happen overnight. If I attend an event that is not meeting Patients Included criteria, I won’t write it off—just like I won’t write off an event (for patients, and one time, for asthmatics) for not communicating to participants to avoid the use of fragrances. Sure, it is an accommodation like a dietary restriction that impacts my health, but just like I can bring my own food, I can also respect that the event organizers’ role stops at encouraging and educating delegates to not wear fragrances—and that it is not at the top of everybody’s mind. If your event doesn’t check the boxes for technology and live streaming, I realize that is extra work (although it can be as easy as attaching an iPhone to a chair—the effort was made!). Funding may not allow for patients' costs to be covered for attendance, but live-streaming and Twitter or web-conference software, even with its issues, can facilitate this connection.
All about the effort
For me, though, it’s about the effort. It’s about knowing that if you are running an event that includes patients and you’ve not met the Patients Included Charter guidelines, that you are trying to get there, that you want feedback on how you can get there, that you as a conference organizer want to include me, the patient—the person with asthma or another health condition that you are talking about and sometimes around—in the conversation. If you’ve learned you can do better, show me, show patients a plan for how we’ll be included.
There are things that patients can predict that will be difficult for us—and we’ll probably have ideas for how these things can be made better. Maybe like me, it’s the fragrance thing, or food—a fragrance-free policy and/or fragrance-free zones can be made available; a menu can be arranged ahead of time, or we can know to bring food. Maybe it’s having a sheet of acronyms that will be used frequently beforehand. Maybe it’s knowing what the organizers want you to get out of the event. Maybe it’s simply having a Plain English Version of what the heck the sciencey people are talking about—not because patients are not smart or science-y, but because for everyone, new things are confusing. My degree is in physical and health education, and not medicine or economics—and just having a health-related background could mean that I’ve got more on board to understand some of the science and semantics at hand, versus someone who studied philosophy (whom I would absolutely regard as smarter than me!) or English (who can likely comprehend anything they read better than I on the first try, and who likely wouldn’t have had to confirm the definition of semantics a sentence ago). The greatness of the patient community is that we bring different strengths to the table—smart comes in different forms.
“Did we meet your needs and what can we do better?”
Maybe it’s about simply asking “Did we meet your needs and what can we do better?”
In the hustle of getting things together for an event, I realize it’s hard to ask “What barriers, if any, have you experienced as a patient at a conference before? How could we do better?” But by putting a Google Form or something together ahead of time, we can solve many problems preemptively.
Patients Included is about including the patient for their whole experience—what they’ve lived, what they’ve studied, what they know, what they want to see change, what they might need, and so forth—it is about them—the patient—us. It’s about anticipating but not assuming what we will need, and how to best include us—before, during and after, whether we are in the room or not.
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