PatientCentered Outcomes Research Institute Needs Industry Input

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit health research organization. Its mission is to fund research that offers patients and caregivers the information they need to make important healthcare decisions.

PCORI focuses on studies that compare options for preventing disease and providing treatment and care. PCORI does so by:

1. Identifying national priorities for research.
2. Creating a research agenda based on identified priorities.
3. Funding research consistent with these priorities and agenda.
4. Providing patients and their caregivers with useful research information.

PCORI is looking for comments about its first set of research priorities and agenda from patients, caregivers, professionals, and the general public. They have prioritized five research areas. These focus on information that patients and caregivers need in order to make important healthcare decisions.

1. Assessment of Prevention, Diagnosis, and Treatment Options.
   The research goal is to determine which option(s) work best for distinct populations with specific health problems. Research would focus on 1) clinical options with emphasis on patient preferences and decision-making, 2) biological, clinical, social, economic, and geographic factors that may affect patient outcomes.


2. Improving Healthcare Systems.
   Focuses on ways to improve healthcare services, such as the coordination of care for patients with multiple chronic conditions. Research would focus on 1) ways to improve access to care, receipt of care, coordination of care, self-care, and decision-making, 2) use of non-physician healthcare providers, such as nurses and physician assistants, and the impact on patient outcomes, 3) system-level changes affecting all populations, diseases, and health conditions.


3. Communication and Dissemination.
   Looks at ways to provide information to patients so that they, in turn, can make informed healthcare decisions with clinicians. Research would focus on 1) strategies to improve patient and clinician knowledge about prevention, diagnosis and treatment options, 2) methods to increase patient participation in care and decision-making and the impact on health outcomes, 3) communication tools that enhance decision-making and achieve desired outcomes, 4) ways to use electronic data ("e-health records") to support decision-making, 5) best practices for sharing research results.


4. Addressing Disparities.
   Assures that research addresses the healthcare needs of all patient populations. This is needed as treatments may not work equally well for everyone. Research would focus on 1) ways to reduce disparities in health outcomes, 2) benefits and risks of healthcare options across populations, 3) strategies to address healthcare barriers that can affect patient preferences and outcomes.


5. Accelerating Patient-Centered and Methodological Research.
   Includes patients and caregivers in the design of research that is quick, safe, and efficient. Research would focus on 1) ways to improve the quality and usefulness of clinical data in follow-up studies, 2) methods to combine and analyze clinical data that follow patients over time, 3) use of registries and clinical data networks to support research about patient-centered outcomes, including rare diseases, 4) strategies to train researchers and enable patients and caregivers to participate in patient-centered outcomes research.

How You Can Help

PCORI is looking patients, caregivers, professionals, and the general public for help in shaping its national priorities and research agenda. Here are ways you can help:

• Provide comment through the online survey. You can do so until March 15, 2012.
• Attend the National Patient and Stakeholder Dialogue. This will be held February 27, in Washington, D.C. A webcast and teleconference will be provided, if you cannot attend in person.

Initiatives like this are important but it is equally important that all of the "players" in quality coordinate and learn from each other. The essence of true culture change is the ability to treat the whole person, clinically and holistically throughout the continuum of their health care needs. Many times, disparate quality pursuits end up forming silos that more often isolate care and people than bringing them together. So to PCORI, please weigh your priorities and compare them against other initiatives, like the the National Alzheimer's Act, where the care of the patient and the caregiver also play a leading role.

Learn more ~ or join the conversation!

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PCORI