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

  • Preface

    All Prefatory Materials

  • Chapter 1


  • Chapter 2

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

  • Chapter 3

    Shared Decision-Making: A Review of the Literature

  • Chapter 4

    Prostate Cancer Data Base Feasibility Assessment

  • Chapter 5

    Osteoarthritis Data Base Feasibility Assessment

  • Chapter 6

    Conclusions and Recommendations

  • Appendix

  • Supplemental

    Supplementary Materials

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

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