Patient-Centered Outcomes

Patient-Centered Outcomes

Co-chairs:

This figure shows a list of Patient Reported Outcomes. They are Health-related quality of life, symptoms, function, satisfaction with care or symptoms, adherence to prescribed medications or other therapy, and preceived value of treatment.Patient-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 NIH Collaboratory Trials.

Areas of Focus

The Patient-Centered Outcomes 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.

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.

As part of this work, the Core conducts interviews with clinicians and other investigators using PROs, including NIH Collaboratory Trial 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).

News and Interviews

Products and Publications

Presentations

  • GR-Video-01-10-14

    Incorporating Research Driven Changes into Health Care Systems' IT Operati​ons: A Multi Perspective Panel Discussion (GR Video 2014)

  • GR-Slides-01-10-14

    Incorporating Research Driven Changes into Health Care Systems' IT Operati​ons: A Multi Perspective Panel Discussion (GR Slides 2014)

  • 17-10-13 GR-Video

    Users' Guide for Integrating Patient-Reported Outcomes in Electronic Health Records (GR Video 2017)

  • 17-10-13 GR-Slides

    Users’ Guide for Integrating Patient-Reported Outcomes in Electronic Health Records (GR Slides 2017)

  • 16-04-22 GR-Video

    Challenges and Opportunities for Using Common PRO Measures in Comparative Effectiveness Research (GR Video 2016)

  • 16-04-22 GR-Slides

    Challenges and Opportunities for Using Common PRO Measures in Comparative Effectiveness Research (GR Slides 2016)

  • 15-04-10 GR-Video

    How Do We Make Patient-Reported Health Measures Available as Endpoints in Pragmatic Clinical Trials? (GR Video 2015)

  • 15-04-10 GR Slides

    How Do We Make Patient-Reported Health Measures Available as Endpoints in Pragmatic Clinical Trials? (GR Slides 2015)

  • 14-08-14 Weinfurt_PRO Core Update

    PRO Core Update at Aug 2014 SC Meeting

  • 14-02-25 PRO_Weinfurt

    PRO Core Update at Feb 2014 SC Meeting

  • 13-08-23 GR-Video

    What Have We Learned About Integrating PROs with EMRs for Learning Systems? (GR Video 2013)

  • 13-08-23 GR Slides

    What Have We Learned About Integrating PROs with EMRs for Learning Systems? (GR Slides 2013)

  • 13-05-17 GR-Video

    Patient-Reported Outcomes Core Update (GR Video 2013)

  • 13-05-17 GR Slides

    Patient-Reported Outcomes Core Update (GR Slides 2013)

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