Leveraging Virtual Communication to Advance PCOR (Patient-Centered Outcomes Research) Adoption by the Rare Bone Disease Community is a year-long project between the Rare Bone Disease Alliance and the Osteogenesis Imperfecta Foundation, with a goal of increasing collaboration to accomplish individual and shared goals. Below is a toolkit of materials that can help.
To learn more about this project, please visit https://www.pcori.org/research-results/2021/leveraging-virtual-communication-advance-pcor-adoption-rare-bone-disease-community
PCOR Engagement Checklist
Please use this checklist as a tool to help evaluate your organization’s commitment to patient centered outcomes research
Click here.
Large Group Meetings
Our first Large Group meeting took place on October 21st, 2021, with presentations from: Courtney Clyatt – PCORI: Supporting the Patient Voice; Lori Crosby, PsyD – The Importance of Diversity/Equity/Inclusion in Clinical Research; Bryce B. Reeve, PhD – Measuring What Matters: Assessing Health-Related Quality of Life in Research Settings; Michael Kelly, MD, PhD – Working with the FDA to Identify Surrogate Endpoints; Deborah Fowler – Putting the Patient Voice in Drug Development.
Our second Large Group meeting took place on December 2nd, 2021, with presentations from: Laura Tosi, MD – Alphabet Soup-What is the Difference between PCOR and PRO; Tracy Hart – Committing to PCOR; Tracy Mulroy, JD – Driving Research that Matters: The Jamie Kendall Fund; Bryce B. Reeve, PhD – Using Surveys/questionnaires to capture patient experiences and perspectives; Teri Swezey, PhD – Using qualitative methods to capture patient experiences and perspectives.
Our third and final Large Group meeting took place on April 21st, 2022, with presentations from: Tracy Hart and Laura Tosi, MD – Why PCOR: What we have Learned; Adrienne McBride – Renaming and Relaunching the Fibrous Dysplasia Foundation; Odette Schwegler, Amanda Cali, Chris Scott, Vanda Harries (Tin Soldiers) – While Looking for One, You May Find Another: The Global Search for the Undiagnosed Individuals with FOP; Michael Stewart – Major Themes from Listening Sessions.
What are other RBDA organizations doing?
PCOR Training Modules
What is Patient-Centered Outcomes Research (PCOR)?
featuring Dr. Laura Tosi
OIF PCOR Introduction Video
On April 3, 2020, the OI Foundation brought together the OI community to discuss the importance of patient-centered outcomes research in defining the natural history of osteogenesis imperfecta. Each session of the meeting is presented as a separate module, so you can watch them at your leisure. [15 Minutes]
What Makes PCOR Different?
Courtney Clyatt from the Patient Centered Outcomes Research Institute presents how patient centered outcomes research is different from the traditional research paradigm. Courtney touches on many important topics, including what engagement in research looks like when you include people with OI from the beginning. [25 minutes]
Engaging Patients in Patient-Centered Outcomes Research
Dr. Amy Corneli, from Duke University’s Division of Population Health Sciences, addresses how to engage individuals with OI in research as true partners, as well as some best practices in what “good” engagement looks like. [33 minutes]
Engaging the Patient Centered Outcomes Research Institute
Courtney Clyatt from the Patient Centered Outcomes Research Institute finishes out the meeting by talking about stakeholders can engage in the important work of PCORI. She covers award options, like the Eugene Washington PCORI Engagement Award Program, as well as how to become more involved on committees at PCORI. [25 minutes]
OIF PCOR Training: Integrating Qualitative Interviews and Quantitative Surveys in Patient-Centered Outcomes Research
On July 10, 2020, Dr. Bryce Reeve and Dr. Amy Corneli presented an overview of using quantitative surveys and qualitative interviews in patient-centered outcomes research.
Best Practices for Quantitative Surveys in Patient-Centered Outcomes Research
On July 16, 2020, Dr. Bryce Reeve conducted a session covering more in-depth information about how to utilize quantitative surveys in patient-centered outcomes research.
Best Practices for Qualitative Interviews in Patient-Centered Outcomes Research
On July 23, 2020, Dr. Teri Swezey conducted a session covering more in-depth information about how to utilize qualitative surveys in patient-centered outcomes research.