The Patient-Centered Outcomes Research Institute (PCORI) has released its first draft national priorities for research and research agenda for public comment. PCORI was created by the Patient Protection and Affordable Care Act but is an independent organization, to be funded by health care stakeholders.  PCORI’s proposed national priorities for patient-centered comparative clinical effectiveness research are:

  • Comparative Assessments of Prevention, Diagnosis, and Treatment Options. The research goal is to determine which option(s) work best for distinct populations with specific health problems.
  • Improving Healthcare Systems. Focuses on ways to improve healthcare services, such as the coordination of care for patients with multiple chronic conditions.
  • Communication and Dissemination. Looks at ways to provide information to patients so that they, in turn, can make informed healthcare decisions with clinicians.
  • 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.
  • Accelerating Patient-Centered and Methodological Research. Includes patients and caregivers in the design of research that is quick, safe, and efficient.

The draft research agenda is:

  • Assessment of Prevention, Diagnosis, and Treatment Options: Research should 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.
  • Improving Healthcare Systems: Research should 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.
  • Communication and Dissemination: Research should 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
  • Addressing Disparities. Research should focus on 1) ways to reduce disparities in healthoutcomes, 2) benefits and risks of healthcare options across populations, 3) strategies to address healthcare barriers that can affect patient preferences and outcomes.
  • Accelerating Patient-Centered and Methodological Research: Research should 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.

Comments are due on March 15, 2012 and are to submitted to PCORI on its website or by mail.  PCORI also is conducting a patient and stakeholder dialogue on February 27, 2012 from 9:30am – 5:00pm at the National Press Club in Washington, DC (with webcast and teleconference available) to obtain comments and input on the draft national priorities for research and research agenda.

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