The objectives of this project are to establish training, provide tools, and create a network to help researchers and patients better connect and collaborate in patient-centered outcomes research (PCOR).
The project will occur in four phases. In Phase I, we will conduct interviews with patients and researchers involved in PCOR to identify gaps in available training and resources. In Phase II, we will synthesize existing training materials. In Phase III, we will host a workshop to prioritize needs for PCOR training and resources. In Phase IV, we will develop prioritized materials and disseminate via the CERTAIN web portal.
The project will help develop a community of researchers and patients informed and trained in skills necessary for effective engagement.
The projected output from this project is an increase in patient involvement in research by evaluating current training and creating gap trainings for patients and researchers; developing tools to support patients and researchers; and building a network of patients and researchers for PCOR.
CERTAIN Patient Advisory Network’s INSPIRE Research Portal provides easy access to existing tools and resources for the patient-centered outcomes research community. The portal includes resources for patients and researchers to use together, as well as those specific to each group. Click here to access the portal.
More information about the INSPIRE project can be found here.
Project Resource: PCOR Community Workshop Videos
Lavallee DC, Gore JL, Lawrence SO, et al., Initiative to Support Patient Involvement in Research (INSPIRE): Findings from Phase I Interviews [Internet] (September 2016).
Lavallee DC, Gore JL, Lawrence SO, et al., Initiative to Support Patient Involvement in Research (INSPIRE): Community Workshop Report [Internet] (July 2016).
Lavallee DC, Chenok KE, Love RM, et al. Incorporating Patient-Reported Outcomes Into Health Care To Engage Patients And Enhance Care, HealthAffairs (April 2016).
VIDEO (below): Supporting Patient Involvement in Healthcare Research
There already are tools that connect patients and researchers to collaborate in patient-centered outcomes research. Danielle Lavallee, PhD, PharmD, a researcher at the University of Washington talks about her Eugene Washington PCORI Engagement Award to collect those tools and create a network of people from both communities.
This project was originally titled Patient Voices: Supporting Patient Involvement in the Learning Healthcare System.