Excerpt

This Addendum to the Third Edition of the Registries for Evaluating Patient Outcomes: A User’s Guide was performed under a contract from the Agency for Healthcare Research and Quality (AHRQ) with the purpose of presenting new, emerging themes related to designing and conducting registries. First published in 2007, the User’s Guide, with translations available in Chinese and Korean, serves as a reference for planning, developing, maintaining, and evaluating registries developed to collect data about patient outcomes. The second (2010) and third (2014) editions incorporated updates to existing topics and included new chapters on methodological and technological advances in registry science.

We are pleased to present 5 new chapters that address emerging topics in registries, including increasing the focus on patients in registries including engaging with patients throughout the design and conduct of registries, methodological considerations for using digital health technologies, designing patient-centric studies, and building registry networks.

Contents

• Acknowledgments
• Preface
• 1. The Increasing Focus on the Patient in Patient Registries
  Sarah E. Daugherty; Sara B. Lee; Ben Nowell; Holly Peay; Dan Solomon; Tanika Gray Valbrun; Priscilla Velentgas; Danielle Whicher.
  • Introduction
  • Patient-Centeredness and Patient Registries
  • Challenges in Developing and Operating Patient-Centric Registries
  • Resources for Building Patient-Centric Registries
  • Conclusion
  • References for Chapter 1
• 2. Engaging Patients as Partners Throughout the Registry Life Cycle
  Nancy Santanello; Joan Largent; Evan Myers; Jaye Bea Smalley.
  • Introduction
  • Rationale for Engaging Patients as Partners
  • Engaging Patient Partners in Planning a Registry
  • Patient Partner and Community Engagement During Registry Operations
  • Challenges, Opportunities, and Need for Further Research
  • Conclusions
  • References for Chapter 2
• 3. Digital Health and Patient Registries: Today, Tomorrow, and the Future
  Jennifer Christian; Nabarun Dasgupta; Melissa Jordan; Maneesh Juneja; Wendy Nilsen; John Reites.
  • Introduction
  • The Rise of Digital Health
  • Utilization of Digital Health in Clinical Research
  • Examples of Digital Health Uses in Global Patient Registries
  • Advantages of Using Digital Health in Patient Registries
  • Current Limitations and Challenges To Using Digital Health in Patient Registries
  • A Look at the Future of Digital Health
  • Conclusion
  • Digital Health Approach Worksheet
  • References for Chapter 3
• 4. Direct-to-Patient Registry and Other Patient-Centric Designs
  Nancy Dreyer; Patricia Franklin; Kevin Haynes; Paul Mehta; Mary Beth Ritchey.
  • Introduction
  • Types of Direct-to-Patient Registry Designs
  • Design and Operational Considerations
  • Ethical Considerations
  • Conclusions
  • References for Chapter 4
• 5. Registry Networks
  Seth Blumenthal; Kathleen Blake; Christina Mack; Danica Marinac-Dabic; Caleb Stowell.
  • Introduction
  • Types of Registry Networks
  • Major Activities of Registry Networks
  • Setting Up a Registry Network
  • Funding and Sustaining a Registry Network
  • Considerations for International Networks
  • Conclusion
  • References for Chapter 5
• List of Reviewers

Suggested citation:

Gliklich RE, Dreyer NA, Leavy MB, Christian JB (eds). 21^st Century Patient Registries. EBook addendum to Registries for Evaluating Patient Outcomes: A User’s Guide, 3^rd Edition. (Prepared by L&M Policy Research, LLC under Contract No. 290-2014-00004-C.) AHRQ Publication No. 17(18)-EHC013-EF. Rockville, MD: Agency for Healthcare Research and Quality; March 2018. www.effectivehealthcare.ahrq.gov.

The Effective Health Care Program of the Agency for Healthcare Research and Quality (AHRQ) conducts and supports research focused on the outcomes, effectiveness, comparative clinical effectiveness, and appropriateness of pharmaceuticals, devices, and health care services. More information on the Effective Health Care Program can be found at www.effectivehealthcare.ahrq.gov.

This report is based on research conducted by the L&M Policy Research, LLC, and partners OM1 and IQVIA, under contract to the Agency for Healthcare Research and Quality, Rockville, MD (Contract No. 290-2014-00004-C). The findings and conclusions in this document are those of the authors, who are responsible for its contents; the findings and conclusions do not necessarily represent the views of AHRQ. Therefore, no statement in this report should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services. All statements in this report, including its findings and conclusions, are solely those of the authors and do not represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its board of Governors, or Methodology Committee.

None of the authors have any affiliations or financial involvement that conflicts with the material presented in this report.

This report may be used and reprinted without permission except those copyrighted materials that are clearly noted in the report. Further reproduction of those copyrighted materials is prohibited without the express permission of copyright holders.

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