A broad range of communities have a stake in generating useful and relevant healthcare research evidence. The term "research partner", includes individuals who have experience living with, caring for, advocating for, and/or treating those with a condition. These individuals are included on research teams to share their knowledge and perspectives to ultimately enhance the relevance and use of the research. PCORI champions "patient partners" who are representative of the population of interest in a particular study, as well as their family members, caregivers, and the organizations that represent them. Other stakeholder partners include members of constituencies based on professional experience including clinicians, community members, healthcare purchasers, payers, industry, hospitals and other health systems, policy makers, training institutions, and researchers.

We realize that individuals may be members of several communities. For example, a nurse who practices direct patient care in a residency program attached to a hospital could present the viewpoint of clinicians, hospital and health systems, or training institutions, or even a patient. For most activities, such as PCORI Advisory Panels or Merit Review, we ask participants to identify the viewpoint they are primarily representing. However, we find it valuable to recognize all the perspectives that a participant has experienced across the healthcare continuum.

How PCORI Defines Stakeholders

Stakeholder Definition Includes Examples

Patients

Persons with current or past experience of illness or injury, family members or other unpaid caregivers of patients, or members of advocacy organizations that represent patients or caregivers

A man who has grown up with and still manages Type I diabetes, a young woman whose leg was amputated after a traumatic injury, a man with bipolar disorder; a woman providing hospice care in her home for her husband with advanced ALS, a man who drives his sister to her chemotherapy appointments and helps her complete household chores, siblings who take turns going to an assisted-living facility to visit their parents with dementia and coordinate their medical needs and manage their finances; the patient council leader for a national heart disease advocacy organization, the patient engagement specialist for a state-based newborn health coalition, the executive director of a stroke patient advocacy foundation who also has personal experience with strokes

Clinicians

Providers of health care in a clinical setting, including physicians, nurses, physician assistants, rehabilitative professionals, pharmacists, mental healthcare providers, complementary and alternative healthcare providers, and professional societies serving clinicians

Family physician in direct patient care in a small group practice, hospital floor nurse, psychologist in private practice, American Medical Association, and American Nurses Association

Researchers

Those who conduct clinical research, including investigators or funders of research and organizations or associations representing the research community

Research administrator at a private university, nurse researcher at a public nursing school, and program officer at a nonprofit research foundation

Purchasers

Those who purchase health benefits for employees and their dependents, including individual businesses as well as local, state, regional, and national business groups, coalitions that represent businesses, and health coalitions

Individuals or organizations such as owner of a family-run business, staff of a state chamber of commerce, or the health benefits manager of a large, ERISA-covered employer

Payers

Those who function as financial intermediaries in the health system, including private insurers and public insurers, and organizations representing insurers, such as America’s Health Insurance Plans

Chief medical officer of health insurance cooperative, claims adjuster at a large insurer, and policy analyst at an insurance trade association, the insurers BlueCross BlueShield, Medicaid, and Medicare

Industry

Companies that design, invest in, or manufacture diagnostics, devices, pharmaceuticals, electronic records systems, and mobile apps, and organizations representing the life sciences industry, such as the Advanced Medical Technologies Association

Chief medical officer of a device manufacturer, government relations staff at a diagnostics trade association, and research director for a pharmaceutical company

Hospitals and Health Systems

Organizations where care is delivered, including public and private hospitals and health systems, urgent care centers, retail health clinics, and community health centers, and organizations representing these facilities

Clinic administrator of a multispecialty physician practice, executive of a public hospital, research director at an integrated health system, and American Hospital Association or America's Essential Hospitals

Policy Makers

Those who help craft public policy at any level of government, including federal, state, and local government officials; federal, state, and local units of government; and organizations that represent policy makers

State Medicaid director, representative of the Office of the National Coordinator for Health IT, and policy analyst at the National Association of County and City Health Officials, and National Conference of State Legislatures and National Association of Counties

Training Institutions

Those that deliver health professional education include public and private universities and colleges, individuals affiliated with the delivery or administration of health professional education, and trade or professional associations representing these institutions, organizations, and individuals

Dean of a nursing school, director of a residency program, and manager of a provider of continuing medical education


Posted: September 10, 2014; Updated: October 9, 2018

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