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Moving from Anecdotal to Evidence-Based: Caring for People with Disabilities
New Insights on Comparative Effectiveness Research from Mathematica's Center on Health Care Effectiveness
Contact: Amy Berridge, (609) 945-3378
Washington, DC—July 12, 2011—People with disabilities make up a substantial portion of the U.S. population, and their numbers are growing over time. In 2008, 14 percent of the adult U.S. population lived with a disabling condition. These individuals have a variety of complex, and often costly, health care needs. For example, $400 billion, or nearly 27 percent of the nation's total health care spending, went toward disability-related care in 2006. Despite the significant size of the population and cost to the nation, many health care decisions are still made based on opinion or anecdote. At the patient level, people with disabilities and their doctors need more evidence on what treatments work and those that work best. At the policy level, decision makers need better evidence to determine what programs are effective and ultimately improve quality of life for people with disabilities.
Mathematica Policy Research's Center on Health Care Effectiveness (CHCE) recently released a number of publications and hosted a forum on how comparative effectiveness research can improve care for people with disabilities. These resources, which speak to both the challenges and promise of using comparative effectiveness research to address the wide spectrum of issues surrounding care for people with disabilities, include the following:
- Identifying Effective Health Care Services for Adults with Disabilities Choosing Wisely: Why Study Designs and Outcome Measures Matter. In this issue forum, a distinguished panel discusses study designs and outcome measures that can be used to address different comparative effectiveness research questions.
- "Choosing Wisely: Selecting Outcomes for Comparative Effectiveness Research on Services for Adults with Disabilities." Debra Lipson, Matthew Kehn, and Eugene Rich, July 2011. This issue brief describes criteria to help researchers select and report on the outcomes that matter most to adults with disabilities and to the providers and others responsible for their care.
- "Matching Study Designs to Research Questions in Disability-Related Comparative Effectiveness Research." Jeffrey Ballou, Eugene Rich, and Matthew Kehn, July 2011. Individuals with disabilities have complex characteristics and health service needs, which can make strong study design and implementation a challenge. Because of this complexity, randomized controlled trials, the "gold standard" of study design to evaluate evidence, may not always be necessary or even ethical. This research brief offers strategies and guidance to help decision makers assess which study designs are likely to provide the required level of evidence of comparative effectiveness to answer disability-relevant health care questions.
- "Comparative Effectiveness of Care Coordination for Adults with Disabilities." Melanie Au, Samuel Simon, Arnold Chen, Debra Lipson, Gilbert Gimm, and Eugene Rich, June 2011. Care coordination for adults with disabilities is typically marked by costly services delivered by a variety of providers, but comparative effectiveness research can help address these challenges. This research brief presents a framework for describing the range of personal characteristics, services, outcomes, and financing issues to consider in evaluating care coordination for adults with disabilities. It also identifies key care coordination dimensions that policymakers and researchers can use in developing and researching care coordination. The brief further presents key findings from a systematic review of the recent care coordination literature, summarizes what additional information is needed, and discusses implications for future research on which care coordination strategies work best for various disabled populations.
About the Center on Health Care Effectiveness: CHCE is a resource for policymakers, the public, and other stakeholders, offering broad-based expertise to provide objective answers to today's most difficult health care questions. The center uses the best scientific methods to address challenging, real-world issues faced by patients, providers, and innovators, creating information they can use to improve health care on the ground.
About Mathematica: Mathematica Policy Research, a nonpartisan research firm, provides a full range of research and data collection services, including program evaluation and policy research, survey design and data collection, research assessment and interpretation, and program performance/data management, to improve public well-being. Its clients include federal and state governments, foundations, and private-sector and international organizations. The employee-owned company, with offices in Princeton, N.J., Ann Arbor, Mich., Cambridge, Mass., Chicago, Ill., Oakland, Calif., and Washington, D.C., has conducted some of the most important studies of health care, education, international, disability, family support, employment, nutrition, and early childhood policies and programs.