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Cores : Patient-Reported Outcomes
NIH Collaboratory Cores and Working Groups

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Patient-Reported Outcomes


Chair: Kevin Weinfurt

NIH Representatives: Susan Czajkowski, William Riley

Members: Amy Abernethy, Gloria Coronado, Richard Deyo, Kathryn Flynn, Janna Friedly, Francis Keefe, Linda Khan, Dana Miskulin, Bret Moran, Ashli Owen-Smith, Doug Zatzick

Project Manager: Tracie Locklear


Figure showing types of PROsPatient-reported outcome (PRO) data are defined by the FDA as “any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else.” These data are increasingly used to inform and guide patient-centered care, clinical decision-making, and health policy decisions and are an important component of many of the Collaboratory’s Demonstration Projects.

The PRO Core works closely with the Collaboratory to create guidelines and define best practices with respect to

  • Selecting, compiling, and curating the most appropriate PRO measures (and stimulating the development of new instruments when new solutions are needed)

  • Creating efficient, high-quality PRO data collection systems compatible with electronic health records and registries

  • Conducting statistical analyses of PRO endpoints

As part of this work, the Core conducts interviews with clinicians and other investigators using PROs, including Demonstration Project principle investigators, to determine how PROs are currently used in the field, brainstorm solutions to challenges, and monitor progress with PRO implementation and data collection.

The Core has written a PROs Living Textbook chapter, a white paper: Strategies for Overcoming Barriers to Patient-Reported Outcomes Measures, and a chapter on including PROs in registries as a part of the AHRQ handbook on registries. It also helped lead the development of an Effectiveness Guidance Document (EGD) for incorporating PROs into comparative effectiveness research in adult oncology and held a workshop to help clinicians implement the NIH Patient Reported Outcomes Measurement Information System (PROMIS). Upcoming publications include a Practical Guide to Initiating and Implementing Patient-Reported Outcomes Measures.

Recent Presentation


Kevin Weinfurt, PhD, of Duke University, and Kathryn Flynn, PhD, of the Medical College of Wisconsin,
discuss patient-reported health measures as endpoints in pragmatic clinical trials.

Products and Publications

Challenges and Opportunities for the Use of NIH-Supported PRO Tools in Comparative Effectiveness Research

Strategies for Overcoming Barriers to Patient Reported Outcomes Measures

Patient-Reported Outcomes Living Textbook Chapter

Presentations

4/10/2015: Grand Rounds Presentation: How Do We Make Patient-Reported Health Measures Available as Endpoints in Pragmatic Clinical Trials? (Video; Slides)

8/19/2014: Patient-Reported Outcomes Core Presentation at Steering Committee Meeting

2/25/2014: Patient-Reported Outcomes Core Presentation at Steering Committee Meeting

1/10/2014: Grand Rounds Presentation: Incorporating Research Driven Changes into Health Care Systems' IT Operati​ons: A Multi Perspective Panel Discussion (Video; Slides)

8/23/2013: Grand Rounds Presentation: What Have We Learned About Integrating PROs with EMRs for Learning Systems? (Video; Slides)

5/17/2013: Grand Rounds Presentation: Patient-Reported Outcomes Core Update (Video; Slides)

News

7/10/2014: Dr. Amy Abernethy Is Senior Author on an Article in Health Affairs “Assessing the Value of Patient-Generated Data to Comparative Effectiveness Research

Interviews

6/2/2015: Dr. Kevin Weinfurt Discusses the Patient-Reported Outcomes Core

9/24/2014: Dr. Kevin Weinfurt Discusses the Patient-Reported Outcomes Core 

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