Keeping Patients at the center of research is a priority. There's many ways in which to participate in research, from being a study participant, a patient consultant on clinical trials or being part of a engagement studio. Below you'll find some ways to get involved with patient driven research.
The University of South Carolina’s Patient Engagement Studio (PES) brings together patients and caregivers, community groups, health system innovators and clinicians, and academic researchers to produce meaningful research and innovation that advances health and research outcomes.
The PATIENTS Program at the University of Maryland School of Pharmacy provides a successfully proven approach to continuous engagement in patient-centered research.
The PATIENTS Professors Academy is a FREE 5-week program that is completely online with interactive components led by our patient advisors and content experts.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit research organization that seeks to empower patients and others with actionable information about their health and healthcare choices. We fund comparative clinical effectiveness research (CER), which compares two or more medical treatments, services, or health practices to help patients and other stakeholders make better informed decisions.
The Patient-Led Research Collaborative is a group of Long COVID patients who are also researchers. We were born out of the Body Politic Slack support group and did the first research on Long COVID in April 2020. We are all researchers in relevant fields – biomedical research, participatory research, neuroscience, cognitive science, public policy, machine learning, human-centered design, health activism – in addition to having intimate knowledge of COVID-19.
The You + ME Registry + Biobank is a collection of patient-reported data + biological samples (e.g. blood) from people living with myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS) + Long Covid, plus healthy volunteers. Our large, rich dataset is used by researchers searching for treatments + a cure.
Kindred is working with Yale researchers to build a learning community to help find answers. Join Kindred now to enroll in LISTEN.