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Managed Care & Persons with Disabilities & Chronic Illnesses

Measuring and Reporting Relevant Information

On Health Plan Performance to Persons with Disabilities or Chronic Illnesses


Shoshanna Sofaer, Dr.P.H., Director, Center for Health Outcomes Improvement Research, Institute for Health Policy, Outcomes and Human Values, The George Washington University Medical Center, Washington, DC.

This session explored the issues, challenges, and opportunities associated with providing information that can assist persons with disabilities and their families in making more informed decisions in selecting health plans and providers. Dr. Sofaer's remarks focused on the dual challenges of providing information that truly facilitates decisionmaking and developing effective ways to share this information.

Dr. Sofaer began her presentation by discussing the reasons for providing such information and then described the different audiences to whom this information could be directed (persons with disabilities and chronic conditions, their families, persons who decide on behalf of those who cannot decide) and their information needs. She then described a range of strategies and tools that States and others could use to disseminate this information, examining a number of important issues in such areas as the politics and ethics of providing decision support and considerations in the use of enrollment brokers, volunteer, advocates, and other intermediaries.

Dr. Sofaer closed by sharing with participants a series of helpful "take home" questions that they could ask to learn more about consumer-oriented information collection and dissemination activities in their own States.


Sofaer S. Consumer Satisfaction and Quality Standards: An Overview of Research and Policy Issues Relevant to How Managed Care Responds to the Needs of Persons with Disabilities. Reproduced for Beyond the Water's Edge: Charting the Course of Managed Care for People with Disabilities: November 1996, pp. 1-26.

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