Mainstay Rhode IslandIn November 2020, the mainstay RI team presented at the Symposium on Substance Use Research hosted by the Rural Drug Addiction Research (RDAR), the Center for Biomedical Research Excellence (COBRE) on Opioids and Overdose, and the West Virginia Clinical and Translational Science Institute (WVCTSI).
The symposium provided the mainstay RI team the opportunity to share our work with peers, engage in productive dialogue and feedback, and reflect on our process up until this point.
The original presentation has been re-formatted for this post. The presentation was delivered by Toban Shadlyn via Zoom.
A short introduction about myself. I work at the Center for Complexity at Rhode Island School of Design, leading the work around Opioids, Care, and Addiction. I am one of the members of the mainstay RI project. We are a multidisciplinary team of five, comprising a nurse, a health researcher, a community organizer, a journalist, and a designer.
I will introduce the mainstay RI project — its origin story, where the project is, and where it is heading. I will also share reflections on what this collaboration has been like. Each of us comes to the work from different disciplines and perspectives, and it’s been both wonderful and challenging to bridge the world of science and design.
(This post will cover the origin story, with posts to follow that will cover the Present & Future state of the project, and Reflections).
Half of the members of the mainstay, RI team busy working during the hackthon weekend. 2019. Photo by Tim Maly.
The Origin Story
Before jumping into describing what mainstay RI is, it is worth taking a minute to explain how the project came to be.
In September 2019, the Center for Biomedical Research of Excellence (COBRE) on Opioids and Overdose hosted a community hackathon “to inspire individuals to come together and change the course of the devastating opioid and overdose crisis in Rhode Island.” Members of the Center for Complexity team and employees of Infosys attended. For us, the event was an opportunity to meet people working in a shared challenge space, and spend a weekend in a creative making mode to create something that could potentially be impactful.
Upon arriving at the hackathon, our cohort quickly split up, connecting and forming teams with other attendees — people we had never met before. The team that ultimately developed the original idea of mainstay RI, consisted of a health researcher (Hannah Dalglish), a community organizer (Michael Beauregard), a journalist (Tim Maly, CfC), a registered nurse (Leigh Hubbard), and two user experience designers (Ivy Lim and Namhee Kwak, Infosys) (see picture above). (I joined the team post hackathon).
During the weekend hackathon, the team chose to focus on the challenges that occur when someone wakes up from a drug overdose (usually because of something laced with fentanyl) — from the aid of Naloxone.
We spoke with clinicians about their personal experience with substance use and/or working on the front lines providing care for people with substance use disorder. We also spoke with many advocates for people who use drugs. We learned that while it is common for some people to wake up from an overdose in public (in their cars parked on the street, public bathrooms, etc.), more often than not, they wake up in an Emergency Department (ED). In 2018 alone, there were over 1,500 ED visits for overdose in Rhode Island (Prevent Overdose RI).
The experience of waking up from an overdose is painful. Many are disoriented and experiencing withdrawal symptoms. All they want to do is leave the chaotic environment of the Emergency Department. It is often at this point in the care chain that help is offered. However, the person who has just come out of an overdose is rarely in a place or position (both physically and physiologically) to accept help then and there. They end up leaving the Emergency Department, thus losing an opportunity in the care chain to provide support.
Our first intuition was to intervene in the Emergency Department. Could it be redesigned to better support people in this acute moment after an overdose? The challenge with this is that the Emergency Department is designed specifically with a fast and hard approach to care. Someone waking up from an overdose, although it is an acute moment, does not respond well to this. Rather than redesigning the Emergency Departments (as we still need ED’s to address acute care) we saw this as an opportunity to intervene elsewhere in the system, providing a “soft and slow” approach to care for those who have been brought back to life after an overdose.
A ‘soft and slow’ approach
mainstay RI is (currently a notional) place for people to go after they’ve woken up from an overdose. It takes the agency of people who use drugs as its first priority and attempts to create an environment where care workers and peers can enable people to define and follow their own path to better outcomes.
This was the pitch we presented at the Hackathon along with initial sketches of the space, ideas around the kinds of services that might be offered, and the principles that would guide its operations. An environment without judgment, that provides comfort, and supports each person’s choice.
The proposal won first place, awarding us $5,000 to continue to develop the project.
The original mainstay RI team, awared $5000 from the hackathon (missing Leigh Hubbard). 2019. Photo by COBRE.
The hackathon allowed us to test the initial idea in a room full of scientists, clinicians, advocates for people who use drugs, and policymakers. It was a great starting point for a weekend sprint. But of course, we still had a lot of questions before continuing down a solutionist pathway. “What do we mean by place? Where is it? How do people get there? What happens once you’re there? How do we design for trust? How do we account for safety, and what does ‘safety’ mean in this context?
Equipped with these questions and more, we needed to advance the project from a promising concept towards realized ideas. Eventually, bringing together people who would be using the space/services into the process of co-designing and shaping it alongside us.
– Written by Toban Shadlyn. Visual identity by Nick Larson. February 2021.