PATIENT-CENTERED OUTCOMES RESEARCH (PCOR)

How does the Patient-Centered Outcomes Research Impact You?
Patient-centered outcomes research (PCOR) is research driven by the OI community’s needs and concerns. Results will help drive research to address the concerns that you feel are most important to you.

The OIF has been approved for the following funding awards through the Eugene Washington PCORI Engagement Awards program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI):

Improving Patient-Centered Outcomes: Expanding Engagement of the Osteogenesis Imperfecta Community and COVID-19 Enhancement Award
As part of this award the OIF developed and currently maintains the OIF COVID-19 TOOLKIT, a collection of important resources and expert information about managing OI during the pandemic
Leveraging Virtual Communication to Advance PCOR Adoption by the Rare Bone Disease Community
Preparing Adults with Osteogenesis Imperfecta to Engage in Research on Access and Quality of Care for Their Rare Disease

Click here to learn more about the projects above.

PCORI is an independent, nonprofit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work. The funds will support bringing together stakeholder groups including patients, caregivers, clinicians and researchers, on an equal footing to identify and fill knowledge gaps, prioritize questions to be addressed with research, and return discoveries to the entire OI community to support collaborative decision making and improve health outcomes.

PCOR Toolkit

Initial report of the osteogenesis imperfecta adult natural history initiative (Orphanet Journal of Rare Diseases)
Assessing disease experience across the life span for individuals with osteogenesis imperfecta: challenges and opportunities for patient-reported outcomes (PROs) measurement: a pilot study (Orphanet Journal of Rare Diseases)
Incorporating the patient perspective in the study of rare bone disease: insights from the osteogenesis imperfecta community (Osteoporosis International)

Learn more about the health research process and patient-centered outcomes research through PCORI’s free online training videos

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]

Measuring What Matters
Dr. Bryce Reeve, from Duke University’s Division of Population Health Sciences talks about how to measure what is important to individuals with OI. He also discusses how the use of PROMIS measures and core outcome assessments, like patient reported outcomes, get to what matters most to the community. [41 minutes]

The OIF Registry
Dr. Laura Tosi, OIF PCORI Award Co-Lead, talks about the current capabilities of the OI Foundation’s registry, and her dreams of how it might expand in the future to better understand the natural history of osteogenesis imperfecta and maximize health outcomes. [27 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.