NEJM: Patient-centered gov't institute sets to raise healthcare bar
Patient-Centered Outcomes Research Institute (PCORI) has outlined the research organization's goals and mission in a perspective article in the New England Journal of Medicine, published Sept. 29.
The Patient Protection and Affordable Care Act of 2010 authorized the creation of PCORI, an agency dedicated to the support and promotion of comparative clinical effectiveness research, wrote A. Eugene Washington, MD, chair of PCORI, and Steven H. Lipstein, MHA, vice-chair of the board of governors of the independent nonprofit. Currently, PCORI funding is set at a total of $210 million for the first three years and increases to approximately $350 million in 2013 and $500 million annually from 2014 through 2019.
“With more than $3 billion to spend between now and the end of the decade, PCORI will support many studies encompassing a broad range of study designs and outcomes that are relevant to patients, aiming to assist people in making choices that are consistent with their values, preferences and goals,” Washington and Lipstein wrote.
PCORI marked its first anniversary in September by celebrating the September 2010 creation of its board of governors, including Washington and Lipstein, by the Government Accountability Office (GAO). The board includes patients and healthcare consumers as well as nurses, physicians and health services researchers. Alongside the board lies a 17-member methodology committee–appointed in January–who are charged with defining rigorous, high integrity standards and methods to strengthen the science underpinning patient-centered outcomes research.
Since becoming impaneled, the institute launched a speaker’s bureau, making governors available to participate in national and local meetings and professional conferences with patients, clinicians, caregivers and policymakers, according to the authors. “The goal of these communication and outreach activities is to promote the inclusion of all voices in the conversation about providing better information to patients and the people who care for them.”
Among PCORI’s principal duties, the organization is attempting to identify national priorities for research. In addition to engaging patients and other stakeholders, the priority-setting process will include a set of landscape reviews, pilot projects and conference grants. The institute will conduct outcomes research assessing the benefits and harms of preventive, diagnostic, therapeutic or delivery-system interventions, highlighting comparisons and outcomes that people care about and experience, such as survival, function, symptoms and health-related quality of life.
“Our landscape reviews will assess the country's current capacity for conducting patient-centered outcomes research and what is currently known about engaging patients and other stakeholders in the research process, including the dissemination of findings,” Washington and Lipstein wrote. PCORI's pilot projects will focus on developing, testing and evaluating novel approaches that inform the national priorities; bring together various stakeholders; translate research into practice; identify gaps in evidence that most affect vulnerable populations; examine the prognostic information available to patients and providers; and elucidate behaviors, lifestyles and choices within patients' control that may affect their outcomes, they added.
The PCORI conference grants are aimed at bringing together diverse perspectives to address discrete problems related to engaging patients in research and healthcare decisions, creating a patient-centered research agenda, and disseminating results effectively.
“The importance of PCORI's work in the communication, dissemination, and uptake of its research findings cannot be overstated,” concluded the authors. “The institute is poised to lead a national movement that meaningfully involves patients and incorporates their voices in producing trusted, evidence-based information, promoting better decisions and ultimately better health for all.”
The Patient Protection and Affordable Care Act of 2010 authorized the creation of PCORI, an agency dedicated to the support and promotion of comparative clinical effectiveness research, wrote A. Eugene Washington, MD, chair of PCORI, and Steven H. Lipstein, MHA, vice-chair of the board of governors of the independent nonprofit. Currently, PCORI funding is set at a total of $210 million for the first three years and increases to approximately $350 million in 2013 and $500 million annually from 2014 through 2019.
“With more than $3 billion to spend between now and the end of the decade, PCORI will support many studies encompassing a broad range of study designs and outcomes that are relevant to patients, aiming to assist people in making choices that are consistent with their values, preferences and goals,” Washington and Lipstein wrote.
PCORI marked its first anniversary in September by celebrating the September 2010 creation of its board of governors, including Washington and Lipstein, by the Government Accountability Office (GAO). The board includes patients and healthcare consumers as well as nurses, physicians and health services researchers. Alongside the board lies a 17-member methodology committee–appointed in January–who are charged with defining rigorous, high integrity standards and methods to strengthen the science underpinning patient-centered outcomes research.
Since becoming impaneled, the institute launched a speaker’s bureau, making governors available to participate in national and local meetings and professional conferences with patients, clinicians, caregivers and policymakers, according to the authors. “The goal of these communication and outreach activities is to promote the inclusion of all voices in the conversation about providing better information to patients and the people who care for them.”
Among PCORI’s principal duties, the organization is attempting to identify national priorities for research. In addition to engaging patients and other stakeholders, the priority-setting process will include a set of landscape reviews, pilot projects and conference grants. The institute will conduct outcomes research assessing the benefits and harms of preventive, diagnostic, therapeutic or delivery-system interventions, highlighting comparisons and outcomes that people care about and experience, such as survival, function, symptoms and health-related quality of life.
“Our landscape reviews will assess the country's current capacity for conducting patient-centered outcomes research and what is currently known about engaging patients and other stakeholders in the research process, including the dissemination of findings,” Washington and Lipstein wrote. PCORI's pilot projects will focus on developing, testing and evaluating novel approaches that inform the national priorities; bring together various stakeholders; translate research into practice; identify gaps in evidence that most affect vulnerable populations; examine the prognostic information available to patients and providers; and elucidate behaviors, lifestyles and choices within patients' control that may affect their outcomes, they added.
The PCORI conference grants are aimed at bringing together diverse perspectives to address discrete problems related to engaging patients in research and healthcare decisions, creating a patient-centered research agenda, and disseminating results effectively.
“The importance of PCORI's work in the communication, dissemination, and uptake of its research findings cannot be overstated,” concluded the authors. “The institute is poised to lead a national movement that meaningfully involves patients and incorporates their voices in producing trusted, evidence-based information, promoting better decisions and ultimately better health for all.”