What makes a clinical study meaningful? For PCORnet, the National Patient-Centered Clinical Research Network, the answer is simple: meaningful research reflects the voice of communities, addressing questions and concerns that are relevant to the real world. PaTH, a PCORnet Clinical Data Research Network (CDRN) funded by PCORI, is making these voices more accessible with the creation of the MyPaTH Story Booth, an audio archive designed to let patients, caregivers, and communities make and share audio recordings of their own health stories and perspectives with researchers. Through the MyPaTH Story Booth, PaTH hopes to generate a better understanding of different stakeholder perspectives to steer clinical studies in the right direction and answer research questions that truly matter to patients.
“The MyPaTH Story Booth was created to connect researchers, people, and clinicians and provide them with insights into what research questions need answers, where gaps are in our current healthcare system, and how we can subsequently make improvements,” said Kathleen McTigue, MD, MPH, MS, PaTH Principal Investigator. “It’s a tool that puts people in the driver’s seat of their own health outcomes and furthers the vital linkage between patient, clinician, and researcher.”
The Story Booth’s users agree, which is one reason why the tool was expanded for the use of researchers outside of the PaTH network. Just last month, an institutional review board (IRB) protocol was approved that now allows future Story Booth uploads to be shared among health researchers, regardless of whether they are affiliated with PaTH.
Those who are interested in participating in the MyPaTH Story Booth simply have to visit the PaTH website and schedule an appointment to share their story. Most people choose to set up a phone interview, but patients who are in or near the Pittsburgh area (where the MyPaTH Audio Booth is based) have the opportunity to share their story in person. Once their interview is finished, users have the option to approve or re-record their story. Once approved, each story is reviewed by MyPaTH staff to ensure that identifying features, such as personal or institutional names, are obscured with an audio tone. Then the full interview is uploaded to the archive and made accessible to researchers, clinicians, and other fellow patients.
Trailblazing an era of deeper relationships with the research community
The Story Booth is not only a platform for people to share their experiences; it also serves as a foundational basis for deeper relationships with the research community. Following a Story Booth submission, users may opt to be informed about research opportunities related to their story or to receive education on how they can become more involved as a patient partner in research. For example, if a caregiver shared a story about his or her experience with dementia, PaTH offers to facilitate an introduction to PCORnet’s dementia-focused partner network. Likewise, the participant would be informed if a researcher approaches the MyPaTH team hoping to engage partners with real-world experience with dementia.
Patients are positively responding to these opportunities. In fact, data from the first 105 participants who used the Story Booth showed that 58 percent of participants were interested in learning about how to become a patient partner in research that is related to their story.
Jim Uhrig is one early Story Booth user connecting with the research community. After being diagnosed with an incurable disease in 2008 and told that patients like him live an average of just three years, Uhrig received a double lung transplant in 2009, and, since then, has lived a relatively healthy life. For the last eight years, his experience has inspired a new mission within him: to improve organ donor awareness and inspire others through his unique story. As part of this mission, Jim serves on PaTH’s Steering Committee, acts as a patient partner with the Idiopathic Pulmonary Fibrosis cohort, and has even written a memoir titled Partners 4 Life.
“It wasn’t long after my diagnosis that I realized the patient voice is often overlooked in clinical research,” said Uhrig. “PaTH is doing a great thing. With tools like the MyPath Story Booth, patients are not only able to share their perspectives through their own words, but they also have the opportunity to connect with one another to share stories, provide support, and form a tight-knit community of like-minded peers.”
Uhrig and other patient partners are not just users of the Story Booth; they actively participated in its development. From suggesting that caregivers’ perspectives were just as important as patients’ to proposing that users should have a chance to edit and review their stories before publication, community members like Jim provided valuable input in the creation of this tool.
Interested in learning more about the strategy behind PaTH and the MyPaTH Story Booth? Listen to a recording of the most recent PCORnet Best Practice Sharing Session webinar that highlighted the Story Booth! You can also ask follow up questions on the PCORnet Commons. Want to experience the MyPaTH Story Booth in action? You can do that by listening to these real-world user stories here.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.