Crowdsourced Health: Online Patient Communities Enabling Health Innovation (2020-2021)

Background

Genetic and genomics research are enabling hundreds of new discoveries each year and shifting the way diseases are understood and treated. However, the number of new discoveries by researchers far outpaces the doctors’ ability to maintain the same pace. To mitigate these challenges, patients with chronic or orphan conditions congregate on social media technology to pool knowledge, share tips and lobby for attention and resources. Today, communities exist by the countless thousands on platforms like PatientsLikeMe, Facebook groups, Reddit and other forums. In some cases, these communities have helped fund research or performed the research themselves.

Project Description

This project will attempt to bridge the gap between patients and potentially life-saving research by exploring ways research can be transmitted, sourced and augmented by new media technologies. At its core, the project team will explore social media as an alternate pathway for connecting patients and the research that can help them.

Though most patient communities can be accessed through an online search, little is known outside their own circles. To date, no one has extensively cataloged these communities or their practices and functions. This project will take a first step toward understanding online patient communities and their potential for connecting research and treatments to the people who need them.

In the project’s first phase, team members will explore current online patient communities, then join some of the communities, interview members and document the ways in which the communities have helped (and hurt) patient outcomes. In the second phase, team members will use the data collected to help identify and implement a new process for disseminating the research. In the third phase, the team will leverage the practical, logistical and structural knowledge gained from disseminating new research about heart-related channelopathies to affected communities in order to create systems and tools that enable other researchers in other fields to replicate the process.

Anticipated Outputs

Team website; pubic-facing articles and other publications

Timing

Fall 2020 – Spring 2021

  • Fall 2020: Begin weekly meetings and reading assignments; introduce team to healthcare industry and competing stakeholders; explore and categorize patient communities; divide into project subteams; join and research online patient communities
  • Spring 2021: Interview stakeholders within patient communities; share collected information; draft research reports; disseminate reports to stakeholders
Group.

Team Leaders

  • Aaron Dinin, Innovation & Entrepreneurship
  • Andrew Landstrom, School of Medicine-Pediatrics

/undergraduate Team Members

  • /undergraduate
  • Alex Choi, Biomedical Engineering (BSE)
  • Amelia Shunk, Int Comparative Studies (AB)

/yfaculty/staff Team Members

  • Donna Crenshaw, Pratt School of Engineering
  • Geoffrey Ginsburg, School of Medicine-Medicine: Cardiology
  • Susanne Haga, Sanford School of Public Policy|School of Medicine-Population Health Sciences
  • William Walker, Pratt School of Engineering

/zcommunity Team Members

  • Henry Copeland, PressFlex