|
For Immediate Release
March 16, 2021
Today, patients and people with disabilities applauded that the Patient-Centered Outcomes Research Institute (PCORI) Board of Governors approved principles guiding its work to consider the full range of outcomes data in its research
|
With this move, PCORI will start the important process of identifying potential burdens and economic impacts important to healthcare stakeholders and undertake efforts to develop “methodological standards” that will more fully inform how PCORI-funded studies should consider and capture relevant economic and cost data in the conduct of their research. Their collaborative and transparent process will benefit the entire field of comparative effectiveness research and inform efforts to address high costs and achieve value in a manner that is centered on patients and people with disabilities.
PIPC Chairman Tony Coelho stated, “Finally, an independent and credible entity will be working with patients and people with disabilities to capture data on the economic and cost outcomes that matter to them. By undertaking this much-needed and long overdue work, PCORI will empower health stakeholders to translate evidence into better decisions that drive better health, without discriminating against our most vulnerable citizens. I have always said that PCORI is a key player in advancing patient-centered solutions to achieving affordability and value. I am excited to see PCORI stepping up to take a leadership role in this discussion.”
PIPC Steering member Rylin Rodgers with the Association of University Centers on Disabilities (AUCD) stated, “PCORI is charged with bringing a more holistic perspective to its research, recognizing that the outcomes that people are seeking and value in their own care don’t always match up with how existing methods define value. People with disabilities have a 30-year history opposing the use of discriminatory metrics such as quality-adjusted life years (QALYs). We know we can do better and are eager to engage with PCORI in its work to identify, collect, analyze and disseminate research that recognizes the burden of disease and disability.”
PIPC Steering member Andrew Sperling with the National Alliance on Mental Illness (NAMI) stated, “NAMI knew when PCORI was created that doing research differently was going to be hard. More than 10 years later, PCORI has made tremendous progress driving a fundamental shift in the culture of research to be more patient-centered. Today, PCORI is uniquely suited to advance research on outcomes that matter and that support health care that delivers real value for people.”
Ms. Donna R. Cryer, JD, President and CEO of the Global Liver Institute and formerly the Interim Executive Director of the People-Centered Research Foundation that provided governance, administrative, and business development leadership for PCORnet stated, “PCORI was created to correct the flaws inherent in our old methods for evaluating treatments that create barriers to care for all patients, and in particular that exacerbate challenges for communities of color who have for too long been all but excluded from research and missing from current data sets. It took COVID-19 for many in this country to really see existing health inequities. It is a relief that PCORI is going to engage in developing new and better research methods for identifying and analyzing the burden of disease that will hopefully account for those inequities.”
PIPC Chairman Tony Coelho stated, “Finally, an independent and credible entity will be working with patients and people with disabilities to capture data on the economic and cost outcomes that matter to them. By undertaking this much-needed and long overdue work, PCORI will empower health stakeholders to translate evidence into better decisions that drive better health, without discriminating against our most vulnerable citizens. I have always said that PCORI is a key player in advancing patient-centered solutions to achieving affordability and value. I am excited to see PCORI stepping up to take a leadership role in this discussion.”
PIPC Steering member Rylin Rodgers with the Association of University Centers on Disabilities (AUCD) stated, “PCORI is charged with bringing a more holistic perspective to its research, recognizing that the outcomes that people are seeking and value in their own care don’t always match up with how existing methods define value. People with disabilities have a 30-year history opposing the use of discriminatory metrics such as quality-adjusted life years (QALYs). We know we can do better and are eager to engage with PCORI in its work to identify, collect, analyze and disseminate research that recognizes the burden of disease and disability.”
PIPC Steering member Andrew Sperling with the National Alliance on Mental Illness (NAMI) stated, “NAMI knew when PCORI was created that doing research differently was going to be hard. More than 10 years later, PCORI has made tremendous progress driving a fundamental shift in the culture of research to be more patient-centered. Today, PCORI is uniquely suited to advance research on outcomes that matter and that support health care that delivers real value for people.”
Ms. Donna R. Cryer, JD, President and CEO of the Global Liver Institute and formerly the Interim Executive Director of the People-Centered Research Foundation that provided governance, administrative, and business development leadership for PCORnet stated, “PCORI was created to correct the flaws inherent in our old methods for evaluating treatments that create barriers to care for all patients, and in particular that exacerbate challenges for communities of color who have for too long been all but excluded from research and missing from current data sets. It took COVID-19 for many in this country to really see existing health inequities. It is a relief that PCORI is going to engage in developing new and better research methods for identifying and analyzing the burden of disease that will hopefully account for those inequities.”
