Partnership to Improve Patient Care

Statement of Tony Coelho

Thursday, March 12, 2009

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 effectiveness research (CER). We must ensure that CER 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.

I am proud to be joining the Partnership to Improve Patient Care as national chair, and look forward to working with all its members to advance sound approaches to CER.

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 CER 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 the government to include all people – the disabled, people of color, women and the elderly, among others – when designing new CER studies. It is only fair that medical innovation benefits and considers the needs of all Americans.

The new economic stimulus legislation recently signed into law by President Obama provides CER with $1.1 billion in new funding. For this new research to be successful, however, these finds must be allocated in an open and transparent process.

The new, stimulus-funded comparative effectiveness research needs to be done right. If so, the health care community will have access to an abundance of information that will help providers and patients make the best decisions. If done improperly, the health provider-patient relationship will be undermined along with quality of care.

Future CER 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.

An expanded CER program must focus on ways to provide additional information so patients and physicians can make better decisions. The soon-to-be-formed Federal Coordinating Council for Comparative Effectiveness Research should strive to enhance information about treatment options in a way that will help close the gap between care known to be effective and the care patients receive.

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 CER

New comparative effectiveness research 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 CER delivers.

Comparative effectiveness research can be an invaluable tool to "learn what works in health care." If future CER 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.