As patients are increasingly becoming active partners in research to ensure that studies focus on the outcomes important to them, more tools and resources are needed to support successful collaborative efforts between patients and researchers. This is why CERTAIN created the INSPIRE Research Portal.
With nearly 100 resources and many contributing organizations, the INSPIRE Research Portal provides easy access to tools and resources for the patient-centered outcomes research (PCOR) community. PCOR are healthcare studies that actively engage patients in the research process from start to finish.
Portal development was informed by a community of patients, caregivers, clinicians and researchers as a part of the Initiative to Support Patient Involvement in Research (INSPIRE), a project of the CERTAIN Patient Advisory Network. This 4-phase project gathered information on the needs of patients and researchers actively partnering on research projects across the Pacific Northwest Region of the United States. This information was then used to develop tools such as this portal as well as resources and best practices to support future successful collaborative efforts.
“The goal for the INSPIRE Research Portal is to provide people who are interested in partnering in research with tools and resources to support their involvement,” says Danielle Lavallee, head of the INSPIRE project. “The portal is also meant to support research teams who make efforts to include patients and community members.”
“I have used the portal to further my self-education,” says Janice Tufte, patient co-investigator on a research project called Learning to Integrate Neighborhoods and Clinical Care (LINCC). “Reading through the available resources has enhanced my basic health systems research foundation.” Resources she has found particularly helpful include those on how to read a scientific paper and how to build trust between patients and researchers.
Daniel Mullins, director of University of Maryland’s PATIENTS Program, agrees. “In the rapidly evolving PCOR space, the ability to search for new tools and resources in the INSPIRE Research Portal is a real time saver and helps to make sure that our team keeps up with emerging best practices,” he says.
You can help support the portal by creating an account, reviewing and rating content, and offering recommendations for new tools that support engagement. Please help strengthen the patient-centered outcomes research community by contributing your voice!