Barbara Massoudi, BreathEasy Principal Investigator, RTI International
Rita Sembajwe, BreathEasy Project Manager, RTI International
Editor's note: This post is fifth in a series on patient engagement.
When describing the BreathEasy project patient population to colleagues, we’re often met with skepticism about the wisdom of working with an economically disadvantaged population. Some people ask whether it wouldn’t have been easier to work with a middle income population or with people who already own smartphones. The assumptions underlying these questions are that this population can’t be trusted with expensive equipment, or won’t be reliable recorders of their observations of daily living (ODLs). Our colleagues are expecting that the choice of population will somehow negatively impact our ability to conduct the research, and therefore, should be avoided.
We tell them the members of the BreathEasy patient population were selected specifically because they stand to benefit the most from using the application as they inherently have fewer resources at their disposal! Patients enrolled in the study were selected because of socioeconomic status based on their residential zip code, and that method worked well for us. The median income for BreathEasy patient participants is between $10,000-15,000 annually; participants have a high school diploma or less education; and most are unemployed.
Our experience working with these patients has proven to be very different from what our colleagues anticipated. As we approach the conclusion of the six-month evaluation period, we’re still seeing very consistent reporting of ODLs by the patients. In fact, whenever patients have anticipated a time when they won’t be tracking consistently, such as a planned surgery or childbirth, we’ve received text messages stating that they’ll be off the application for some time, but back on soon. We’ve also received phone calls and text messages when patients have had unexpected events, such as hospitalizations, that have caused them not to report. The patients have been very apologetic about not recording for a few days.
What we find striking about this is that the level of patient engagement we’re seeing exceeds that of middle class populations. Perhaps the BreathEasy population is more grateful for the mobile application and the opportunity to participate in the study. We’ve heard patients express that such an app “…will help me and my doctor track my asthma a lot easier,” which tells us that they do feel like the app serves a purpose. We have also heard patients express the view that “the app is designed by us, for us, and for our benefit.” These are certainly encouraging words for researchers taking a user-centered design approach. We also think there’s an important element of trust and fulfillment of expectations here. As Barbara’s mother used to say, “If you expect people to do great things and let them know it, they usually won’t let you down.” We’d say there’s more than a bit of that happening here. Stay tuned for a future post on the outcomes of our evaluation period.