Project Summary
Background: Most individuals and families facing a life-altering diagnosis do everything within their capacity to maximize their chance of survival. For example, patients who are not scientifically trained may teach themselves to interpret complex scientific concepts to better understand their prognosis. However, peer-reviewed research published in top-tier journals is not written for patients and caregivers. There are limited audio- and video-based tools to help patients and caregivers extract meaning and insights from peer-reviewed research from top-tier journals.
Proposed Solution to the Problem: The project has sought to democratize cancer information through a podcast, “The Patient from Hell,” since May 2022. The podcast ranks among the top 10 percent of podcasts globally shared. The team plans to leverage the podcast and marketing channels to disseminate PCORI-funded research results virtually across the globe. The team is based in San Francisco, but the podcast’s audience is worldwide (70 percent in the United States, 30 percent in India).
Objectives: The project team will produce a special series of 12 podcast episodes per year to:
- Disseminate PCORI-funded cancer research findings
- Enhance engagement with stakeholders
- Grow its audience
Activities:
- Conduct a survey to finalize the topics from the list of cancer-related patient-centered outcomes research/comparative clinical effectiveness research findings
- Produce 12 episodes per year for two years
- Disseminate episodes through the project team’s channels using organic and paid marketing
- Conduct 24 virtual podcast clubs to engage the community
Projected Outcomes and Outputs:
During the project, the team will add PCORI research topics to its database, grow its stakeholders by at least 200 percent and actively engage the community in research through podcast club discussions.
In zero to two years, the project team will grow its stakeholder base by at least 500 percent and provide a platform where patients/caregivers can easily search and access relevant research insights and hear from the principal investigator directly.
In three and more years, the team will have a robust community that can actively engage with research content on its platform and will achieve a Net Promoter Score of 80.
Patient and Stakeholder Engagement Plan: Project stakeholders include anyone on the cancer journey: patients, survivors and family caregivers. Before the production of the episodes, the project team will survey its community. During this project, the team will leverage the engagement models specific to each channel used for dissemination (e.g., comments on YouTube, reviews on Spotify, likes on Facebook, shares on Twitter, etc.). This will be ongoing with every podcast episode released and for two weeks after each podcast. The team will host 24 virtual podcast clubs for the community to discuss the content shared in the episode and will supplement these efforts with qualitative interviews with stakeholders.
Project Collaborators: The project team has established numerous partnerships with hospitals, patient advocacy groups and other patient communities. Through current and future partners, project team members will further disseminate this body of work.