IAP Health: Sharon Jiang (’23)
PKG IAP: Health – I came for the program’s eye-catching, bright blue advertisement posters on campus, but I stayed for the collaboration with Boston Medical Center’s Autism Program to learn about their impact in the community. I previously had a fantastic experience as a PKG Social Impact Fellow, thanks to the support of my community partner, Reboot Rx, and PKG staff! Through this experience, I had the opportunity to explore how I could contribute to improving Boston’s healthcare landscape. I wanted to immerse myself yet again with PKG IAP: Health and Boston Medical Center, New England’s largest safety-net hospital.
While working with the Autism Program’s Operations team, not only did I gain an understanding of how hospital initiatives could run smoothly, but I also enjoyed the chance to connect with autism patients and families.
The Program Directors entrusted our team with the enormous responsibility of improving their patient referral database. This database serves as the “engine” of the entire program, keeping track of over 1600 patient referrals to autism resource specialists. Although this was initially an overwhelming undertaking, our work had a massive impact for both patients and the team of providers. We made the database more user-friendly by coding for individual patient status to ensure that providers stay organized with appointments. We designed this new streamlined database so that the Autism Program team could hit the ground running for the new year. This database could help the team more seamlessly identify which patients needed particular resources, as well as automatically pull relevant statistics about their diverse patient population.
While these statistics painted a numerical picture of the Autism Program’s impact, we went beyond the rows of an Excel spreadsheet to find emotionally driven, human-centered narratives from patients and families. We contacted over 25 patients, caregivers, and professional collaborators who have strong ties with the Autism Program. I was initially surprised and delighted that many of the people we contacted expressed strong enthusiasm to give back to this program and participate in our initiative. As I listened to each individual’s unique story, I realized the profound connection between the Autism Program and the community it serves. Describing this connection myself would not do these stories justice, so I’ll highlight some particularly powerful themes from our diverse group of interviewees.
Parent of Autistic Child:
“Without you, mothers like me would be lost; and I appreciate your time and effort in making my son’s quality of life bearable.”
Teen involved with TEAM (Teens Engaged as Mentors) & TEACH (Teens Educating, Advocating and Consulting in Healthcare) programs:
“It’s amazing to see other people with autism, because there’s just an understanding and you don’t have to explain anything. It’s just nice to be around people like you. I’m just trying to bring positivity to people who might not have come to terms with their autism.”
Community Partner from the Autism Insurance Resource Center:
“I wake up energized every day, hoping that I can help a family break down a barrier or open a door.”
These stories can resonate with so many different audiences. Providers can understand the value of the resources and improve the care they give their patients. The operations team can illustrate meaningful impact to apply for grants that will sustain the program for many years to come. Perhaps most importantly, autism patients and families can realize that they’re not alone and that the program creates a family that offers needed support.
The stories I’ve heard have also shed an important light on health equity. I talked to families who experienced issues related to long waitlists for both autism-specific and general children’s programs, which have exacerbated during the pandemic. Some caregivers I interviewed expressed their desire to see adaptive swimming lessons or summer camps made more accessible, especially for families that do not have the financial resources to participate in these programs. With this valuable feedback, we can create a conversation with the Autism Program to actually implement needed programs to create a more equitable healthcare landscape in Boston.
This project (which we alliteratively dubbed “Interviews about Impact”) started as a small seedling of an idea, but we’ve planted it as a starting point for future cohorts of interns to continue this work. We hope that these interns can learn from this rich experience and help improve the program by listening to human driven narratives.
I’m grateful for the opportunity to connect with patients, families, and the dedicated Autism Program team. This chance has reframed my perspective on healthcare. I originally viewed health as a time-based practice, where the connection between physician and patient stopped after diagnosis and treatment. Now I have internalized that healthcare is informed not only by physical symptoms, but also the crucial individual context, especially for a lifelong condition such as autism.