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Putting Patients at the Center

When I was 17 years old, I started having seizures and was later diagnosed with epilepsy, a chronic neurological disorder characterized by periodic seizures. Because of my disability, I experienced a childhood of ridicule and taunting. From my experience, I know that news of such a diagnosis is often overwhelming and dispiriting. But what can be worse for patients is not having access to the proper treatments to help their individual condition. [IMGCAP(1)]That is worth bearing in mind as our country debates reforms to our health care system. It is crucial to make sure our approach to health care is patient-focused and that we ensure patients get the care they need even as we grapple with rising health expenses. It’s especially important to keep in mind as we develop comparative effectiveness research. Properly structured, this research can help improve patient care and provide a strong evidence base to improve health care value. The recently passed stimulus bill provides $1.1 billion to pursue comparative effectiveness research efforts. The research will give physicians a wealth of valuable information to support treatment decision-making and help close evidence gaps in health care. But to do this properly, research must take into consideration the unique health challenges facing people with disabilities, the elderly and those in underserved communities. We must ensure research methods take into account the many differences among patients that can influence the clinical outcome of a medical intervention. The United States is becoming increasingly diverse, and different patient populations respond differently to various treatments, drugs and medical procedures. Our medical research must adapt to ensure that all communities have access to the best possible treatment, regardless of race, ethnicity or condition. We also must focus on ways to provide additional information so patients and physicians can make better decisions. The Federal Coordinating Council for Comparative Effectiveness Research should strive to enhance the availability of information about treatment options in a way that will help close the existing gap between care known to be effective and the care patients receive. Closing this treatment gap also means that research must compare not only the full range of treatments but also the way care is organized. Benefit designs, care coordination and utilization management strategies affect what care patients receive. We need to compare how different approaches to these strategies work, to encourage adoption of those that do the best job of helping patients get the care that’s right for them. Comparative effectiveness research must support continued medical advancement. Consider the potential for personalized medicine, which can not only improve patient care and inform decision-making, but help control health care expenses as well. We must make sure that in efforts to compare the effectiveness of treatments across large groups of Americans we do not overlook the role that individualized and highly tailored medical treatments can play in maximizing patient welfare. More data and research are always useful, but it must not overlook the needs of individual patients. In 1990, while I was in Congress, I authored the Americans With Disabilities Act to prevent discrimination toward people with disabilities. I continue now, as I have for the past 40 years, to fight to give those voices a seat at the table. I strongly urge Congress and our new president to develop a patient-centered approach to CER that is committed to preserving the physician-patient relationship that will further allow patients to receive the best care possible.Former House Majority Whip Tony Coelho (D-Calif.) is author of the Americans With Disabilities Act and chairman of the Partnership to Improve Patient Care.

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