Learning Communities

Learning Communities bring patients and caregivers together with other partners (e.g., researchers, providers, policy makers, industry leaders, etc.) to explore a topic that impacts how we interact with our healthcare system. Members of a Learning Community will share their lived experiences, identify gaps, problem solve, and co-create resources that can help transform research, care, and policy.

Engaging patients and caregivers as equitable partners — as opposed to research subjects — can improve research quality, heighten impact, enhance the public perception of research, and improve the applicability of research for addressing real-world problems.

Patient engagement in research also changes how the team approaches the topic and defines the problem. Involving patients on the research team early in the research process encourages scientists to value topics important to patients, define research questions that resonate with the patient community, and design research protocols that are responsive to the patient experience. Continued engagement with patient partners throughout the end of a project ensure that the research findings are interpreted and communicated in ways that resonate with broad and diverse audiences.

It is beneficial for patients and caregivers to participate in research to ensure that:

• The research being conducted best addresses their priorities

• Patient and caregiver experiences are adequately understood and acknowledged

• Improvements and research parameters are grounded on the lived experiences/ expertise that come directly from patients and caregivers

As a patient or caregiver looking to engage in research, consider this:

• Locate and respond to authentic/trusted patient partner engagement requests. Patient Insight Institute works to connect patients with these opportunities.

• Ask how co-collaborators are meeting patients and caregivers where they are

• Join a Learning Community and actively engage with your workgroup members

• Attend regularly scheduled listening sessions (upcoming events can be found here)

We have designed a few trainings to build your knowledge base and hone your skills needed for research collaboration:

• Get started on PCORI’s Research Fundamentals self-paced, online training using the Quick Start Guide

Patient-Centered Outcomes Research (PCOR) is a broad category of research— focused on answering questions and studying outcomes that are important to patients, caregivers and other healthcare partners stakeholders.