We know at PCORI that engaging patients and stakeholders is critical to generating and conducting meaningful research that informs decisions about health care. As partners, patients and stakeholders bring a wealth of knowledge and expertise to a project. However, we have also learned that partnering successfully in the research process can be facilitated by having information about the process and the confidence to contribute.

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We’re pleased to announce the launch of a free online training to support stakeholder partners in contributing to research.

Research Fundamentals is a self-paced, on-demand training that uses evidence-based approaches and plain language to describe and explain patient-centered outcomes research. It is designed to help anyone—patients, caregivers, and other stakeholders—learn about the research process, regardless of their level of experience.  

The training includes helpful resources that provide an overview of patient-centered outcomes research and engagement, as well as learning modules that take users through the research cycle from beginning to end. An interactive PDF introduces users to patient-centered outcomes research (PCOR) and explains what makes it different from traditional healthcare research. A video-based module features researchers and patient and stakeholder partners describing the challenges and rewards of engagement. Learning modules cover topics such as Developing Research Questions; Designing the Research Study; Planning Patient-Centered Consent and Study Protocols; Sampling, Recruiting, and Retaining Study Participants; and Understanding and Sharing Research Findings.

We developed Research Fundamentals based on extensive research and with input from experienced stakeholder partners and integrated their voices throughout to create a learning package that responds to the needs of and encourages PCOR partners with varied learning styles and goals. A navigator tool lets users explore the topics covered in each module and build an individual learning plan that meets their current information needs. As they move through the content, visual depictions and animations explain scientific concepts, while knowledge checks reinforce these learnings. A downloadable interactive glossary provides access to definitions while users work through the learning package and as they interact with research terminology in the real world.

The current health crisis in the United States has generated a lot of interest in clinical trials and how they’re conducted. A tool such as Research Fundamentals, which works to build understanding about how research is done, will help remove one hurdle for people who want to help drive patient-centered research.

Research Fundamentals is the first of two learning packages we are developing in partnership with the American Institutes for Research. The second, Building Effective Multi-Stakeholder Research Teams, is designed to support new and experienced researchers and stakeholder partners collaborating in patient-centered outcomes research. Launching in early 2021, it will offer practical guidance on how to work successfully as a team. We hope that both learning packages will prove to be valuable resources for patient-centered outcomes research teams and encourage stakeholders’ successful involvement in research that shapes healthcare decisions.  

We value hearing from our community. If you have any questions or would like to provide feedback about Research Fundamentals, please contact us here.