Coffee with Researchers
One morning in August 2012, I woke up well before my morning meetings with the National Asthma Patient Alliance Executive Committee members and Asthma Society of Canada staff, and wandered up a hill in downtown Quebec City, leading me to the Quebec Convention Centre and its connected hotels.
What, exactly, I wondered, am I doing in the lobby of the Hilton at 7 AM to meet a world renowned asthma researcher?
We were both in Quebec for the World Congress of Asthma—her more-so for the Congress than I. My friend Stephen had, upon hearing I was headed to Quebec City for part of the event—encouraged me to reach out to Dr. Sally Wenzel from the University of Pittsburgh and the Asthma Institute/Severe Asthma Research Program to see if she wanted to meet for coffee. And now, here I was a few months later, hanging in the lobby near the elevators, kind of unsure of myself.
The thing that, as patient advocates, we don’t necessarily realize how important our perspectives are to researchers. Not all researchers are created equal, but, there are several asthma researchers whom I have met that actually enjoy having a more casual conversation with a patient—things get complicated if that patient is their patient, but I was just me, who happens to have asthma and wants to chat with people like Sally who are working to make a difference in our lives through research.
Sally and I weaved through the Old City of Quebec until we found an open bakery (finally—everything, it seems, is closed on Sunday morning in Quebec!), ordered coffees of some variety, and sped through an hour-and-a-half just talking about asthma, what was going on for asthma patients in Canada, research, and of course, the beautiful Quebec City. We also had a brief encounter attempting to ask, in French to some random people, for our picture to be taken—it turned out, those people did not speak French well either!< In 2015, Sally and I reconnected, along with Dia, at the American Thoracic Society conference in Denver, Colorado, where she updated us on some projects around severe asthma that some of our online friends had been working on at the time. All it took was a quick e-mail and some schedule wrangling, but we made it work.
Earlier that day, Dia and I met with Canadian asthma researcher, Dr. Dilini Vethanayagam from the University of Alberta at the Colorado Convention Centre Hyatt. Dilini and I had shared hours of phone conversations about patient engagement, asthma research, and Canadian healthcare in the past, and I think our visit with Dilini was even more awesome than Dia or I had thought it would be.
The take home message here: If you want to meet people… just ask! The worst they can do is say no, and then you are no further behind than if you had not asked! I’ve learned so much by just sending an e-mail that—even if I have to introduce myself from square one!—I now take that chance to be turned down wherever I can, because I have learned so much from when people have said yes, let’s meet! Researchers may be busy—of course!—but they want to meet the people that their work will impact, too. The other day after I attended a webinar from the University of Alberta on asthma research and e-mailed Dilini afterward about the presentation, and she didn't realize I wasn't on-site at U of A and her response was: "Are you still on campus?! Call my cell!" You may see yourself as “just a patient"… but your perspective is worth a lot!
Recently, I wrote a similar e-mail to Sally: Hi, I hear you’ll be in Winnipeg in a couple weeks for a lecture. When are you arriving/departing, and are you able to grab coffee while you’re in? Much less formal than my first e-mail of the sort four years ago, I’m sure. Add that to the list of things—like asthma—I’d never have expected in my life! And, I may be a nerd, but I think it’s pretty cool.
Have you ever gotten "moon face" as a side effect of prednisone?