This website was created through a collaboration between the University of Washington Department of Family Medicine and the Cystic Fibrosis Reproductive and Sexual Health Collaborative.
Cystic Fibrosis is a rare, genetic disease that affects about 30,000 people in the United States and 70,000 people world-wide. Cystic Fibrosis is a multi-system disease that primarily affects the lungs with frequent infections. Because people with Cystic Fibrosis can pass their lung infections to one another, they have been engaging online long before the rest of the world joined them during the COVID-19 pandemic.
The Workspace for Online Patient Engagement in Research website was coordinated by the University of Washington Department of Family Medicine’s Dr. Emily Godfrey (Project Lead) and the team members listed below. The Workspace for Online Patient Engagement in Research was created to help bring the historical knowledge of online engagement of those with Cystic Fibrosis to all patient-engaged teams interacting solely online. We also built patient-centered outcomes research (PCOR) capacity in the Cystic Fibrosis community. We share our training materials as an illustration for other PCOR teams to use.
Published Articles
- Thayer, Erin K., et al. “Best practices for virtual engagement of patient-centered outcomes research teams during and after the COVID-19 pandemic: qualitative study.” Journal of participatory medicine 13.1 (2021): e24966
- Godfrey, Emily M., et al. “Educational needs and preferences for patient-centered outcomes research in the cystic fibrosis community: mixed methods study.” JMIR formative research 5.3 (2021): e24302
- Godfrey, Emily M., et al. “Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community.” Research Involvement and Engagement 7.1 (2021): 1-15
Presentations
- Godfrey, E., Al Achkar, M., Thayer, E., Pam, M., Mentch, L., Brown, G., & Kazmerski, T. (2019). Patient Centered Outcomes Research 101. University of Washington Department of Family Medicine.
- Godfrey, E., Al Achkar, M., Thayer, E., Pam, M., Mentch, L., Brown, G., & Kazmerski, T. (2019). Research 101. University of Washington Department of Family Medicine.
- Godfrey, E., Al Achkar, M., Thayer, E., Pam, M., Mentch, L., Brown, G., & Kazmerski, T. (2019). Designing and Implementing a PCOR Study. University of Washington Department of Family Medicine.
- Godfrey, E., Al Achkar, M., Thayer, E., Pam, M., Mentch, L., Brown, G., & Kazmerski, T. (2019). Participate in and Maintain a PCOR Team. University of Washington Department of Family Medicine.
The PCORI Eugene Washington Engagement Award Team (10569-Uwash)
- Emily Godfrey MD, MPH
University of Washington, Department of Family Medicine - Molly Ruben, MPH
University of Washington, Department of Family Medicine - Erin Thayer, MPH
University of Washington, Department of Family Medicine - Morhaf Al Achkar, MD, PhD
University of Washington, Department of Family Medicine - Brittany Rattiliff, MPHc
University of Washington, Department of Family Medicine
- Molly Pam, BSc
Patient Partner - Laura Mentch, EdM
Patient Partner - Georgia Brown, MLA
Patient Partner - Traci Kazmerski, MD, MSc
University of Pittsburgh, Department of Pediatrics