Participatory medicine, a roving duffel bag, and new relationships
The following was written by Laura Haley (@llhaley), a member of the 2014 Medicine X Student Leadership Program. Laura is currently a medical student at the Michigan State University College of Human Medicine.
At Medicine X on September 5-7, Nick Dawson, President-elect of the Society for Participatory Medicine, described a paragon of participatory medicine: “Patients working with other stakeholders, co-designing, creating, and shaping health care.” He also proclaimed, “Participatory medicine is a social movement.”
I was able to become actively involved in that movement as a member of the 2014 Medicine X Student Leadership Program (SLP).
The SLP offers 10 students from around the world a scholarship to attend Medicine X, as well as the opportunity to participate in the conference through a project. As part of the Engagement & Producer Track, I partnered with ePatient scholars to co-design solutions to unique challenges that impact the patient experience at MedX. Together we created a roving medical bag for ePatients to utilize while at the conference. The bag was “roving” because the medical kit needed to be mobile, accessible, and useful for the ePatients. The medical bag also needed to have any and all resources an ePatient might need during their conference stay and travel. As a medical student, I brought medical knowledge and critical thinking skills to our joint design project. As ePatients, they brought their personal narrative and a unique understanding of illness. Together as stakeholders, we were all on an even playing field, and we sat around our round table (read: “Google Hangouts”) and co-designed our innovative solution.
The roving medical bag was a success. Items contained inside included glucose tablets, ace bandages, pain relievers, a blanket, fluffy socks, and much more. The bag was stationed at the registration tables and could be transported to and from the hotels if need be. Ideas that came up for future conferences included tech solutions, such as an app ePatients could download that would help them locate and obtain a roving medical bag. Of course the best part was seeing ePatients benefit from the items inside and hear how our efforts had addressed symptoms encountered while at the conference.
Ultimately, the roving duffel bag taught all of us what amazing solutions we can design when patients and health care providers come together to innovate health care. I was continuously impressed with the ideas of my colleagues. Two excellent contributions from our ePatient collaborators are below:
Leslie Rott (@LeslieRott) suggested the bag contain a portable fan for patients who sweat as a side effect of their corticosteroids.
Liza Bernstein (@itsthebunk) proposed, “How might we meet the emotional needs of patients who might be triggered by telling their stories to a large audience?”
Daniel Siegel, Clinical Professor of Psychiatry at UCLA, talked about the term “consilience” in his keynote speech at the start of the Medicine X conference. Consilience is the idea of taking pursuits and knowledge from multiple different groups and converging them into one cohesive, comprehensive solution or truth. This idea is a thread throughout all of the Medicine X conference, and it is a concept I am grateful to have experienced as part of the SLP. When all of the stakeholders get together with their unique experiences, solutions get created that benefit everyone involved. This project has illustrated this idea for me in such a tangible way that I will forever seek out patients to collaborate with when it comes to innovating health care.
To utilize another idea from his talk, Dr. Siegel defined relationships as “the sharing of information and energy with others.” Thank you so much, ePatients, for sharing your energy with me. Your stories are ingrained in my mind and I am so happy to have created relationships with all of you.
To learn more about our roving medical bag and the other SLP projects, please check out this video created by ePatient team leader, Meredith Hurston.