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PCORI releases report proposing national priorities for patient-centered clinical effectiveness

Posted on January 24, 2012 | No Comments

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The Patient-Centered Outcomes Research Institute (PCORI) proposed national priorities for patient-centered comparative clinical effectiveness in their first version of PCORI’s Research Agenda. PCORI expects to learn and update this as
we move forward. We are not specifying or prioritizing any particular condition or disease for
research, although we may do so in the future. Consistent with the criteria outlined in the Affordable Care Act (ACA), PCORI’s first research agenda looks at:

-Comparisons 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 Health care 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’s 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 health
outcomes, 2) benefits and risks of health care options across populations, 3) strategies to
address health care 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.

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The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors recently amended its January 2012 draft research agenda in response to public comments. The board found 15 major themes that emerged from 474 public comments. The purpose of the National Priorities for Research and Research Agenda is to guide funding for comparative clinical effectiveness research. The agenda amendments address PCORI's focus on patient engagement and transparency, patients with multiple chronic conditions, patients with rare diseases, improvement of health delivery systems, and health literacy. The final version of the agenda and the national research priorities...
The Robert Wood Johnson Foundation (RWJF) and Urban Institute recently released a paper examining the increased emphasis on a patient-centered care system under the Affordable Care Act (ACA). According to the Institute of Medicine (IOM), patient-centeredness means "care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions." Through provisions requiring quality of care measurements, public reporting, and performance payments, the ACA reflects the movement toward patient-centered care. Although the ACA provisions are a significant milestone in the development of patient-centered health care delivery, rhetoric will need to be matched with funding for data collection, building consensus on measure use, and the integration, alignment, and harmonization of measures in different programs.
A new Comparative Effectiveness Research (CER) Board, established by the Affordable Care Act (ACA), is seeking public input as to what kinds of research should be performed. The ACA helped establish the Patient-Centered Outcomes Research Institute (PCORI), which will provide information to consumers to help guide their treatment decisions. PCORI is an independent body, charged with overseeing CER guidelines in the U.S. For more information on CER, click here.
The Patient Protection and Affordable Care Act (ACA) has the potential to help States reorient their systems of long-term care. The goal is to move away from nursing homes and institutional care and toward a greater emphasis on home- and community-based services. This will enable States to both meet a broad range of needs and support family caregivers. The report, "How The Affordable Care Act Can Help Move States Toward A High-Performing System Of Long-Term Services and Supports," published by Health Affairs, outlines five key characteristics of a high-performing system of long-term services and supports. The paper describes an emerging "scorecard" that could help measure states' progress toward this goal. Finally, the Health Affairs piece highlights aspects of the ACA which will support the creation of such a high-performing system for the disabled and those with chronic conditions.
The Affordable Care Act (ACA) includes provisions that promote research to evaluate and compare health outcomes and the clinical effectiveness, risks, and benefits of medical treatments, services, procedures, drugs, and other strategies or items that treat, manage, diagnose, or prevent illness or injury. One provision relates to the establishment of the private, nonprofit corporation, the Patient-Centered Outcomes Research Institute. The Institute will assist, through research, patients, clinicians, purchasers, and policy-makers in making informed health decisions by advancing the quality and relevance of evidence-based medicine through the synthesis and dissemination of comparative clinical effectiveness research findings. The Internal Revenue Service (IRS) released a notice of proposed rulemaking (NPRM) regarding fees on health insurance policies and self-insured plans for the patient-centered outcomes research trust fund. The NPRM contains proposed regulations that implement and provide guidance on the fees imposed by the Affordable Care Act (ACA) on issuers of certain health insurance policies and plan sponsors of certain self-insured health plans to fund the Patient-Centered Outcomes Research Trust Fund. These proposed regulations affect the issuers and plan sponsors that are directed to pay those fees.
The Department of Health and Human Services announced May 6 that it has awarded six million dollars under the American Recovery and Reinvestment Act of 2009 to Mathematica Policy Research, Inc. to establish a Center of Excellence in Research on Disability Services, Care Coordination, and Integration. http://www.hhs.gov/news/press/2010pres/05/20100506a.html.
The recently enacted Patient Protection and Affordable Care Act (PPACA) builds on federal efforts to support and direct research comparing patient treatments.