The MyPath Story Booth Project is an opportunity for patients and caregivers to share their healthcare experiences with researchers. Patients are asked to enter the story booth and discuss their treatment and care. Patients answer questions such as “How has your life changed after receiving a diagnosis?” and “What would you like to change about your experience?” Patients may also participate via a phone interview if unable to travel to the booth’s location. The process takes roughly 15 minutes and patients must be over 18, and open to sharing a story about their healthcare experience. Those who express an interest in learning about research opportunities are referred to a relevant study team to discuss how they can be involved.
Upon patient approval, the audio recordings are reviewed to remove all identifiable information. For example, if a person states that they are from Baltimore, MD, there is a high chance that they are from Johns Hopkins. The data is sorted based on the story shared and categorized by the type of illness.
Here at Johns Hopkins, patients from both the Lexington and Northeast “Day at the Market” events and the Caroline Street outpatient center were asked to participate. The booth is currently located in the Caroline Street Outpatient center lobby near the pharmacy. It will be available until late summer and then traveling to another PaTh network location.
Researchers and study teams interested in gaining more information and how to access the data collected, please contact Mary Thomas at firstname.lastname@example.org.
PaTH is a clinical research network comprised of several institutions and health systems and a part of the Patient-Centered Outcomes Research Institute (PCORI). PaTH’s goal is to address patients’ questions and concerns so that they may make better decisions regarding their health. This network collectively learns from diverse populations by working directly with patients, care givers and the community to grasp what’s important to patients in order to improve care delivery.