Amputee Coalition Joins Allies in Drive for Patient-Centered Approach to Comparative Effectiveness Research

By: Morgan Sheets

The federal American Recovery and Reinvestment Act (ARRA), which went into effect earlier this year, provided $1.1 billion for comparative effectiveness research. This is just one example of the many public policy efforts intended to advance research to provide information that helps clinicians and patients choose the option best fitting a patient's needs and preferences. The goal of comparative effectiveness research is to provide both patients and practitioners knowledge about the best treatments and interventions for specific types of patients. This type of information is helpful not only in providing care, but also crafting policy.

The Amputee Coalition supports comparative effectiveness research as an important tool in helping patients and providers distinguish between the relative effectiveness of treatment and service options. Knowing the clinical effectiveness of a wide range of healthcare interventions could lead to improvements in the quality of care and could potentially maximize the impact of the healthcare dollars spent in this country.

If appropriately structured, comparative effectiveness research can have a significant benefit for people with disabilities. To achieve this, the research must include several important elements. These involve provisions to assure that research meets the needs of all consumers and patients, including racial and ethnic minorities and people with disabilities, throughout the research program; establish safeguards to preserve patient access to high-quality care and support the ability of providers to tailor care to the needs of the individual; and require open and transparent processes where patients and providers have input into research priorities and study design and have an equal voice in governance of a research entity.

Senate Finance Committee Chairman Max Baucus (D-MT) and Senate Budget Committee Chairman Kent Conrad (D-ND) introduced the Patient-Centered Outcomes Research Act of 2009 (S 1213) on June 9, 2009. The goal of S 1213 is to improve the quality of healthcare that Americans receive by ensuring doctors and patients have the best possible research and information on the effectiveness of different healthcare treatments.

The Amputee Coalition believes that the Patient-Centered Outcomes Research Act of 2009 addresses meaningful protections to prevent inappropriate restrictions in coverage of and access to healthcare and long-term services and supports for people with disabilities and chronic conditions. S 1213 offers a strong foundation for advancing comparative effectiveness research that meets the needs of people with disabilities and avoids inappropriate access restrictions on beneficial care.

On the House side, Reps. Donna Christian-Christensen (D-VI), Jay Inslee (D-WA) and Fred Upton (R-MI) are working to include many of the same points to ensure that people with disabilities are protected.  

The Amputee Coalition is grateful to these congressional leaders for working to advance legislation on comparative effectiveness research that is truly centered on the needs of consumers, patients and people with disabilities.

Sheets is the national advocacy director for the Amputee Coalition. The Amputee Coalition is involved in a diverse range of legislative efforts to ensure that amputees are able to meet their full potential. To find our more or to get involved, visit our Web site at www.amputee-coalition.org/advocacy/index.html