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Cover of PROTEUS Guide

The PROTEUS Guide to Implementing Patient-Reported Outcomes in Clinical Practice: A Synthesis of Resources (The PROTEUS-Practice Guide) offers guidance on designing, implementing, and managing PRO systems and related data when using PROs in clinical care. This Guide was developed by the PROTEUS Consortium (Patient-Reported Outcomes Tools: Engaging Users & Stakeholders), which helps navigate the use of PROs in clinical trials and clinical practice. PROTEUS partners with key stakeholder groups to disseminate and implement tools that have been developed to optimize the use of PROs in clinical trials and routine care.

This Guide focuses specifically on the use of PROs in clinical practice for individual patient management (i.e., my clinician using my data to inform my own care). While individual-level patient data collected to inform that patient’s own care can be aggregated for use as real-world evidence, in quality assessment efforts, and in other ways, this Guide focuses primarily on the use of PROs in individual patient-clinician interactions.

As described by the U.S. Food & Drug Administration and others, PROs are patients’ own reports of how they feel, function, live their lives, and survive. A growing evidence base suggests using individual patients’ PRO data to inform their care facilitates patient-clinician communication, helps identify symptoms, informs patient monitoring and management, can improve efficiency, and sometimes, increases survival.

Using PROs in Clinical Care

Using PROs in clinical care effectively requires addressing a range of considerations. Several established resources provide guidance on specific aspects of using PROs in clinical care, such as how to display PRO results or how to integrate PRO data into the electronic health record. This Guide collates and synthesizes the guidance from these foundational resources to create a unified, comprehensive document that covers all stages of the process. For the most comprehensive and detailed information on a topic, we encourage you to review the relevant foundational resources listed at the end of each section. We also suggest you cite these resources directly, in addition to the Guide, as noted in Acknowledgements.

Throughout the Guide, we refer to both patient-reported outcomes (PROs) and patient-reported outcome measures (PROMs). We refer to PROs when discussing the outcome itself, or more generally to refer to the field of collecting patient-reported outcomes. We refer to PROMs when we are describing the standardized, validated questionnaire or survey used to elicit information from the patient about a given outcome. Both concepts are distinct from patient-reported experience measures (PREMs), which are questionnaires used to assess patients’ perceptions of their care, although many of the considerations that apply to PROs and PROMs also apply to PREMs.

How the Guide is Organized

The Guide is organized into 16 sections which span three overarching stages of using PROs in practice: Design, Implementation, and System & Data Management. Within each section we present a high-level overview, and then expand upon this information. For each consideration, the Guide provides a range of options rather than one “right” way. In almost all cases, the options are not mutually exclusive, and it is advisable to adopt multiple approaches. As such, the Guide is applicable to a broad range of “health systems,” from solo practices to large group practices, from outpatient to inpatient settings, and from small clinics to large integrated health systems.

Finally, while the Guide draws primarily from the foundational resources, a selection of other relevant references are available on the Further Reading page.

Relevant Primary Resources by Topic for PROs in Clinical Care

Chapter ISOQOL Users Guide PRO-EHR Users Guide Recommendations for PRO Data Display PRO-Cision Medicine Methods Toolkit ePROs in Clinical Care Toolkit
Goals X X
Barriers & Facilitators X X X X X
Training & Engagement X X X X X
Identifying Patients X X
Outcomes & Measures X X
Frequency & Timing X X
Administering & Scoring X X
Workflow X
Results Presentation X X X X X
Visualizations X X X X X
Responding to Issues X X X
Evaluation X
EHR Integration X X
Governance X X
Data Pooling/Exchanging X
Ethical/Legal Issues X
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Background And Citing The Proteus-Practice Guide

Nothing in this Guide should be construed to represent or warrant that persons using this Guide have complied with all applicable laws and regulations. All individuals and organizations using this template have the responsibility for complying with the applicable laws and regulations or regulatory requirements for the relevant jurisdiction.

Each chapter of the Guide lists the key foundational resources that informed its content. To appropriately recognize the foundational resources, we encourage you to cite both the Guide and the relevant foundational resource(s). Recommended citations are provided here.

Suggested Citation

The PROTEUS Guide to Implementing Patient-Reported Outcomes in Clinical Practice
A Synthesis of Resources. Prepared by Crossnohere N, Brundage M, Snyder C, and the Advisory Group, 2023. Available at:

How to Cite the Foundational Resources

ePROs in Clinical Care: Guidelines and Tools for Health Systems
LeRouge C, Austin E, Lee J, Segal C, Sangameswaran S, Hartzler A, Lober B, Heim J, Lavallee DC. ePROs in Clinical Care: Guidelines and Tools for Health Systems. Seattle, WA: CERTAIN, University of Washington. May 2020. Available at:

Users’ Guide to Integrating Patient-Reported Outcomes in Electronic Health Records.
Snyder C, Wu AW [Eds.]. Users’ Guide to Integrating Patient-Reported Outcomes in Electronic Health Records. Patient-Centered Outcomes Research Institute, 2017. Available at:

  • Working group members: Joseph Ali, Ethan Basch, Judy Baumhauer, Jim Bellows, Arlene Chung, Michele Halyard, Andrea Hartzler, Rachel Hess, Erin Holve, Roxanne Jensen, Irene Katzan, Carolyn Kerrigan, Danielle Lavallee, Esi Morgan, Greg Pawlson, Lucy Savitz, Dean Sittig, Galina Velikova, Neil Wagle, Kevin Weinfurt, Danielle Whicher, Adam Wright

Making a picture worth a thousand numbers: recommendations for graphically displaying patient-reported outcomes data
Snyder C, Smith K, Holzner B, Rivera YM, Bantug E, Brundage M; PRO Data Presentation Delphi Panel. Making a picture worth a thousand numbers: Recommendations for graphically displaying patient-reported outcomes data. Quality of Life Research. 2019;28:345-356

International Society for Quality of Life Research User’s Guide to Implementing Patient-Reported Outcomes Assessment in Clinical Practice
International Society for Quality of Life Research (prepared by Aaronson N, Choucair A, Elliott T, Greenhalgh J, Halyard M, Hess R, Miller D, Reeve B, Santana M, Snyder C). Users Guide to Implementing Patient-Reported Outcomes Assessment in Clinical Practice, Version 2015. Available at:

PRO-cision Medicine Toolkit for Personalizing Care Using Patient-Reported Outcomes
A PRO-cision Medicine Methods Toolkit to Address the Challenges of Personalizing Cancer Care Using Patient-Reported Outcomes. Available at:

  • Contributing authors: Kate Absolom, Alex Alexander, Anthony Arnold, Lisa Barbera, Ethan Basch, Susan Beck, Antonia Bennett, Jakob Bjorner, Amanda Blackford, John Browne, Michael Brundage, Stefan Cano, Philip Carr, David Cella, Charles Cleeland, Karon Cook, Katrina Croghan, Allison Deal, Geoff Delaney, Amylou Dueck, Ivana Durcinoska, Briant Fruth, Andrea Gibson, Afaf Girgis, Martha Grootenhuis, Karen Hammelef, Lotte Haverman, Sydney Henson, Jennifer Jansen, Roxanne Jensen, Carolyn Kerrigan, Madeleine King, Jennifer Le-Rademacher, Tito Mendoza, Lesley Moody, Kathi Mooney, Eugene Nelson, Brant Oliver, Bryce Reeve, Dennis Revicki, Yonaira Rivera, Qiuling Shi, Jeff Sloan, Claire Snyder, Angela Stover, Angelina Tan, Carrie Tompkins Stricker, Maud van Muilekom, Hedy van Oers, Galina Velikova, Rahma Warsame, Meagan Whisenant, Albert Wu, David Zahrieh

Further Reading

The Guide draws primarily from the foundational resources cited in each chapter. Please click here to find a selection of other relevant references.

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