Ever since I was young, people turned their back on me because of my disability. Down but not out, I overcame this hurdle and have gone on to devote the past 40 years of professional life to fighting for the disabled in our country. But the fight to improve the lives of people with disabilities did not end there. Today, the fight continues
Back when I was in the Congress, authoring the Americans with Disabilities Act embodied the battle that I fought for people with disabilities. Today, the new battle is in the emerging field of comparative clinical effectiveness research. We must ensure that this research considers the unique health challenges facing not only people with disabilities, but also the elderly and those in under-served communities. "Cookie-cutter medicine" can be detrimental to patients and undermines the trusted relationship between physician and patient.
In 2009, I was proud to be asked to Chair the Partnership to Improve Patient Care (PIPC), and am pleased that our efforts led to the creation of a Patient-Centered Outcomes Research Institute (PCORI) as part of the Affordable Care Act. Congress finally chose to create a research institute that explicitly gave a vote to patient stakeholders on the Board of Governors, and that explicitly directed the institute to fund comparative clinical effectiveness research that responded to patient preferences, needs and outcomes.
Our work is not done, though. Patients, their health care providers, and caregivers must stay engaged in the research process to ensure that comparative clinical effectiveness research answers the questions that are most important in the context of individual patient needs, preferences and outcomes.
Living with a disability presents many unique challenges. But these challenges do not mean that you cannot achieve whatever you set out to do. I have worked hard to ensure that people who live with disabilities have the right to be productive citizens. In that same spirit, I will continue to work for expanded clinical research that provides those with disabilities, like me, every chance to make a difference in our world today.
As someone with epilepsy as well as a former policymaker, I know the importance of securing a seat at the table so our voice will be heard. We must urge entities like PCORI to include all people – the disabled, people of color, women and the elderly, among others – when designing new comparative clinical effectiveness research studies. It is only fair that medical innovation benefits and considers the needs of all Americans. Their work must develop novel research methods that take into account the many differences among patients that impact the clinical outcome of a medical intervention. As the U.S. becomes increasingly more diverse, our medical research must adapt to ensure that all communities have access to the best possible treatment, regardless of race, ethnicity, sex or condition.
Comparative clinical effectiveness research priorities must focus on ways to provide additional information so patients and physicians can make better decisions. PCORI is working toward a process for prioritizing research questions through the use of advisory panels and other deliberative stakeholder engagement activities. As Chair of PIPC, I urge all of our members and friends to stay engaged with PCORI to ensure that their work truly improves the lives of patients.
As we renew our focus on health care reform, caring for people at the margins will be more important than ever. One of the areas where this will play out is in the emerging field of comparative clinical effectiveness research.
Therefore, a comparative clinical effectiveness research agenda must support continued medical advancement. This progress, such as personalized medicine, will not only improve patient care and inform decision-making; it will also help control health care expenses. These outlays will also be controlled as a result of the increased efficiency and data influx that well-designed comparative clinical effectiveness research delivers.
Comparative clinical effectiveness research can be an invaluable tool to "learn what works in health care." If research is patient-centered and steadfast in its preservation of an unhindered provider-patient relationship, providers and patients alike will learn a great deal about effective clinical decision-making.
In 2009, I was proud to be asked to Chair the Partnership to Improve Patient Care (PIPC), and am pleased that our efforts led to the creation of a Patient-Centered Outcomes Research Institute (PCORI) as part of the Affordable Care Act. Congress finally chose to create a research institute that explicitly gave a vote to patient stakeholders on the Board of Governors, and that explicitly directed the institute to fund comparative clinical effectiveness research that responded to patient preferences, needs and outcomes.
Our work is not done, though. Patients, their health care providers, and caregivers must stay engaged in the research process to ensure that comparative clinical effectiveness research answers the questions that are most important in the context of individual patient needs, preferences and outcomes.
Living with a disability presents many unique challenges. But these challenges do not mean that you cannot achieve whatever you set out to do. I have worked hard to ensure that people who live with disabilities have the right to be productive citizens. In that same spirit, I will continue to work for expanded clinical research that provides those with disabilities, like me, every chance to make a difference in our world today.
As someone with epilepsy as well as a former policymaker, I know the importance of securing a seat at the table so our voice will be heard. We must urge entities like PCORI to include all people – the disabled, people of color, women and the elderly, among others – when designing new comparative clinical effectiveness research studies. It is only fair that medical innovation benefits and considers the needs of all Americans. Their work must develop novel research methods that take into account the many differences among patients that impact the clinical outcome of a medical intervention. As the U.S. becomes increasingly more diverse, our medical research must adapt to ensure that all communities have access to the best possible treatment, regardless of race, ethnicity, sex or condition.
Comparative clinical effectiveness research priorities must focus on ways to provide additional information so patients and physicians can make better decisions. PCORI is working toward a process for prioritizing research questions through the use of advisory panels and other deliberative stakeholder engagement activities. As Chair of PIPC, I urge all of our members and friends to stay engaged with PCORI to ensure that their work truly improves the lives of patients.
As we renew our focus on health care reform, caring for people at the margins will be more important than ever. One of the areas where this will play out is in the emerging field of comparative clinical effectiveness research.
Therefore, a comparative clinical effectiveness research agenda must support continued medical advancement. This progress, such as personalized medicine, will not only improve patient care and inform decision-making; it will also help control health care expenses. These outlays will also be controlled as a result of the increased efficiency and data influx that well-designed comparative clinical effectiveness research delivers.
Comparative clinical effectiveness research can be an invaluable tool to "learn what works in health care." If research is patient-centered and steadfast in its preservation of an unhindered provider-patient relationship, providers and patients alike will learn a great deal about effective clinical decision-making.
