What does PCORnet mean by patient-centered research?
PCORnet’s patient-centered approach means that it:
Uses a research model that engages patients, caregivers, clinicians, and health systems as partners — alongside researchers — in the conceptualization, design, and conduct of studies and in the dissemination of results.
Prioritizes research that answers key questions that improve the ability to deliver appropriate care which leads to improved outcomes for individuals, communities, and their clinicians and healthcare systems.
Benefits for Patient Partners
SETTING THE RESEARCH AGENDA
Patient advocates are active in prioritizing research questions and setting the research agenda.
COLLABORATING IN ALL PHASES OF RESEARCH
Patients contribute to study designs, making clinical research less burdensome and identify outcomes that matter to them.
PARTICIPATING IN CLINICAL RESEARCH
Study participants report positive experiences in contributing to research that leads to improved clinical answers.
ACTING ON RESEARCH FINDINGS
Patients drive adoption of actionable findings and changes in clinical care.
This Patient Partnership Framework brings PCORnet’s mission to life and keeps patients at the center of everything this Network of Network does.
Patient Partnership Framework Goals:
Establish broad communication and connection with patient communities
Include patients at all levels of governance
Ensure patient partnership at all stages of research
Develop an evidence base around patient engagement
Provide technical assistance for patient partnership
Share best practices via patient partnership affinity group
Communicate study results to participants
Facilitate patient awareness of data uses
Deep Patient Involvement
Shifting Patient Roles from Research “Subject” to Research “Partner”
ADAPTABLE is a large study being conducted using PCORnet’s resources. Patient “Adaptors” are transforming the study by:
- Helping prioritize the research topic and design the protocol, consent form, study portal, and study materials.
- Disseminating study updates and results to other patients and the community at large.
- Actively participating in investigator meetings, the Steering Committee, and the Executive Committee.
Communicating Research Results to Inform Patient Decisions
Results from the PCORnet Bariatric Study are helping patients make better informed decisions about their weight loss surgery options by:
The Evolution of Patient-Centricity
The AIDS epidemic of the 1980s and 1990s spurred the birth of an advocacy movement that catalyzed the creation of patient-driven clinical trial designs, regulatory reform to speed access to new drugs, and increased funding for research. Other patient groups soon picked up this playbook and themselves became major forces in shaping research.
FDA publishes guidance for industry for the use of patient-reported outcome measures in medical product development to support labeling claims.
The Patient-Centered Outcomes Research Institute (PCORI) is established to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make better-informed health decisions.
PCORI invests more than $250 million in the development of PCORnet designed to empower people to make informed healthcare decisions by enabling clinical research that is faster, easier, less costly and, most importantly, more relevant to their needs.