When I was invited to join the mPOWEr team as a patient advisor, I was thrilled. I had the opportunity to help build a tool that could improve the post-discharge experience for surgical patients. My own misadventures with post-op SSI (surgical site infection) convinced me this was a most important mission.
My post-discharge experience after elective surgery was an example of a complete communication fail – from the discharge teaching to trying to get help when I sensed something was wrong with my wound, all the way until I finally went to my family doctor and he diagnosed my SSI. I don’t think this was my surgical providers’ fault; we were in a system that didn’t allow for effective monitoring of complications or effective communication if complications did arise. In all, it only added anxiety and suffering to the already difficult period after surgery.
With minimal clinical research experience, I couldn’t help but wonder what would I contribute to a team of such highly educated, experience people? My value is my patient experience! My role is to focus the team with a more patient-centered approach and help design a tool that patients will actually use. I’ve had the unique opportunity of being involved in this project from its very beginnings. This means that I can continually provide a patient presence and ensure that issues most important to patients are represented through the entirety of the project.
Working as a patient advisor on mPOWEr has done so much to inform what it means to me to be an ePatient. My own patient experience is my expertise and I’m using it to focus our research and remind the team why we are doing this in the first place. There are serious gaps in the current system for getting surgical patients through the post-discharge period. By creating a patient-centered mHealth tool that can empower patients in their wound self-management and promote better patient-provider engagement, we can prevent more stories like mine from happening, and potentially even improve the whole post-discharge experience.