Evaluating the Feasibility of Developing National Outcomes Data Bases to Assist Patients with Making Treatment Decisions

by Cheryl L. Damberg, Liisa Hiatt, Kitty S. Chan, Rebecca Shaw, Michael D. Greenberg, Michael Steinberg, Matthias Schonlau, Jennifer Malin, Elizabeth A. McGlynn

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Patients frequently face the need to assess tradeoffs between various treatment options and are being encouraged to become more active participants in their own care. This report examines the feasibility of establishing a national outcomes database that would be used by patients and providers to make more informed treatment decisions. The authors focus on an assessment of issues surrounding two such databases: one for prostate cancer and one for surgical treatment for patients with osteoarthritis. They found strong desire among patients to have access to an information source that would help them understand what the various treatment options are and what outcomes people like themselves could expect from each of the various options. Providers expressed support for the idea and seemed interested in finding ways to better organize and present information to help patients understand treatment options. Data collection systems that longitudinally track patient outcomes already exist, although none has taken the next step of making the information available for direct use by patients. The authors conclude that these systems demonstrate the value, desirability, and technical feasibility of establishing national longitudinal outcomes databases, but that substantial resources are required to design and operate them.

Table of Contents

  • Summary PDF

  • Preface

    All Prefatory Materials PDF

  • Chapter 1

    Introduction PDF

  • Chapter 2

    A Framework for Assessing the Feasibility of Establishing National Outcomes Data Bases PDF

  • Chapter 3

    Shared Decision-Making: A Review of the Literature PDF

  • Chapter 4

    Prostate Cancer Data Base Feasibility Assessment PDF

  • Chapter 5

    Osteoarthritis Data Base Feasibility Assessment PDF

  • Chapter 6

    Conclusions and Recommendations PDF

  • Appendix PDF

  • Supplemental

    Supplementary Materials PDF

The research described in this report was sponsored by the Agency for Healthcare Research and Quality. The research was conducted within RAND Health.

This report is part of the RAND Corporation monograph report series. The monograph/report was a product of the RAND Corporation from 1993 to 2003. RAND monograph/reports presented major research findings that addressed the challenges facing the public and private sectors. They included executive summaries, technical documentation, and synthesis pieces.

The RAND Corporation is a nonprofit institution that helps improve policy and decisionmaking through research and analysis. RAND's publications do not necessarily reflect the opinions of its research clients and sponsors.