Registries for Evaluating Patient Outcomes (Text Version)

Slide presentation from the AHRQ 2011 conference.

On September 19, 2011, Elise Berliner made this presentation at the 2011 Annual Conference. Select to access the PowerPoint® presentation (750 KB). .


Slide 1

Slide 1. Registries for Evaluating Patient Outcomes

Registries for Evaluating Patient Outcomes

Elise Berliner, Ph.D.
Director, Technology Assessment Program
Center for Outcomes and Evidence

Slide 2

Slide 2. Agenda  Overview of the Registry of Patient Registries (RoPR) Project:  Elise Berliner, Ph.D., Task Order Officer.  Updates to Registries for Evaluating Patient Outcomes: Quality Improvement Registries:  Richard Gliklich, M.D., Senior Editor.  Protection of Registry Data from Litigation and Other Confidentiality Concerns for Providers and Manufacturers:  Jane Hyatt Thorpe, J.D., Lead Author.  Developing the Registry of Patient Registries:  Dan Levy, M.S., Chief Technology Officer, Outcome.

Agenda

  • Overview of the Registry of Patient Registries (RoPR) Project:
    • Elise Berliner, Ph.D., Task Order Officer.
  • Updates to Registries for Evaluating Patient Outcomes: Quality Improvement Registries:
    • Richard Gliklich, M.D., Senior Editor.
  • Protection of Registry Data from Litigation and Other Confidentiality Concerns for Providers and Manufacturers:
    • Jane Hyatt Thorpe, J.D., Lead Author.
  • Developing the Registry of Patient Registries:
    • Dan Levy, M.S., Chief Technology Officer, Outcome.

Slide 3

Slide 3. Registry of Patient Registries (RoPR) Project  Primary Objective: Engage stakeholders in the design and development of the RoPR.  This project also includes 4 secondary objectives designed to support the efficient use of high-quality registries for clinical research:  Funded under the American Recovery and Reinvestment Act of 2009.  Covers 5 major tasks, to be completed between 2010 and 2013.  Awarded to the Outcome DEcIDE Center.

Registry of Patient Registries (RoPR) Project

  • Primary Objective: Engage stakeholders in the design and development of the RoPR.
  • This project also includes 4 secondary objectives designed to support the efficient use of high-quality registries for clinical research:
    • Funded under the American Recovery and Reinvestment Act of 2009.
    • Covers 5 major tasks, to be completed between 2010 and 2013.
    • Awarded to the Outcome DEcIDE Center.

Slide 4

Slide 4. RoPR Tasks 1 and 2  Task 1: Develop the Registry of Patient Registries:  Engage stakeholders in the design and development of the RoPR, a searchable central listing of patient registries in the U.S. that is compatible with ClinicalTrials.gov.  Task 2: Outcome Measures Framework:  Produce a framework for standardizing outcome measure definitions that may be used as a resource in various systems such as the RoPR.

RoPR Tasks 1 and 2

  • Task 1: Develop the Registry of Patient Registries:
    • Engage stakeholders in the design and development of the RoPR, a searchable central listing of patient registries in the U.S. that is compatible with ClinicalTrials.gov.
  • Task 2: Outcome Measures Framework:
    • Produce a framework for standardizing outcome measure definitions that may be used as a resource in various systems such as the RoPR.

Slide 5

RoPR Tasks 3 and 4  Task 3: Archiving Expired Registries:  Develop a white paper on the feasibility of and potential strategies for a voluntary data repository for expired registries.  Final paper submitted in August 2011.  Task 4: Third edition of "Registries for Evaluating Patient Outcomes":  Expand the User's Guide to address 11 new topics and update existing chapters and case examples.

RoPR Tasks 3 and 4

  • Task 3: Archiving Expired Registries:
    • Develop a white paper on the feasibility of and potential strategies for a voluntary data repository for expired registries.
    • Final paper submitted in August 2011.
  • Task 4: Third edition of "Registries for Evaluating Patient Outcomes":
    • Expand the User's Guide to address 11 new topics and update existing chapters and case examples.

Slide 6

RoPR Task 5  Task 5: Web-Based Collaborative Registries Forum:  Develop a paper exploring whether a Web-based forum on registries would encourage useful discussion, sharing of best practices, and debate on new challenges.

RoPR Task 5

  • Task 5: Web-Based Collaborative Registries Forum:
    • Develop a paper exploring whether a Web-based forum on registries would encourage useful discussion, sharing of best practices, and debate on new challenges.

Slide 7

Today's Discussion  Today's discussion will focus on:  Updates to Registries for Evaluating Patient Outcomes.  Developing the RoPR.

Today's Discussion

  • Today's discussion will focus on:
    • Updates to Registries for Evaluating Patient Outcomes.
    • Developing the RoPR.
Current as of March 2012
Internet Citation: Registries for Evaluating Patient Outcomes (Text Version). March 2012. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/news/events/conference/2011/berliner/index.html