Adoption of Patient-Generated Health Data in Oncology: A Report From the NCCN EHR Oncology Advisory Group

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Peter D. Stetson Memorial Sloan Kettering Cancer Center, New York, New York

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Nadine J. McCleary Dana-Farber Cancer Institute, Boston, Massachusetts

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Travis Osterman Vanderbilt-Ingram Cancer Center, Nashville, Tennessee

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Kavitha Ramchandran Stanford Cancer Institute, Palo Alto, California

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Amye Tevaarwerk University of Wisconsin Carbone Cancer Center, Madison, Wisconsin

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Tracy Wong Seattle Cancer Care Alliance, Seattle, Washington

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Jessica M. Sugalski National Comprehensive Cancer Network, Plymouth Meeting, Pennsylvania

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Wallace Akerley Huntsman Cancer Institute at the University of Utah, Salt Lake City, Utah

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Annette Mercurio City of Hope National Medical Center, Duarte, California

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Finly J. Zachariah City of Hope National Medical Center, Duarte, California

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Jonathan Yamzon City of Hope National Medical Center, Duarte, California

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Robert C. Stillman The Ohio State University, James Comprehensive Cancer Center, Columbus, Ohio

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Peter E. Gabriel Abramson Cancer Center at the University of Pennsylvania, Philadelphia, Pennsylvania

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Tricia Heinrichs National Comprehensive Cancer Network, Plymouth Meeting, Pennsylvania

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Kathleen Kerrigan Huntsman Cancer Institute at the University of Utah, Salt Lake City, Utah

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Shiven B. Patel Huntsman Cancer Institute at the University of Utah, Salt Lake City, Utah

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Scott M. Gilbert Moffitt Cancer Center, Tampa, Florida

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Everett Weiss Memorial Sloan Kettering Cancer Center, New York, New York

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Background: Collecting, monitoring, and responding to patient-generated health data (PGHD) are associated with improved quality of life and patient satisfaction, and possibly with improved patient survival in oncology. However, the current state of adoption, types of PGHD collected, and degree of integration into electronic health records (EHRs) is unknown. Methods: The NCCN EHR Oncology Advisory Group formed a Patient-Reported Outcomes (PRO) Workgroup to perform an assessment and provide recommendations for cancer centers, researchers, and EHR vendors to advance the collection and use of PGHD in oncology. The issues were evaluated via a survey of NCCN Member Institutions. Questions were designed to assess the current state of PGHD collection, including how, what, and where PGHD are collected. Additionally, detailed questions about governance and data integration into EHRs were asked. Results: Of 28 Member Institutions surveyed, 23 responded. The collection and use of PGHD is widespread among NCCN Members Institutions (96%). Most centers (90%) embed at least some PGHD into the EHR, although challenges remain, as evidenced by 88% of respondents reporting the use of instruments not integrated. Forty-seven percent of respondents are leveraging PGHD for process automation and adherence to best evidence. Content type and integration touchpoints vary among the members, as well as governance maturity. Conclusions: The reported variability regarding PGHD suggests that it may not yet have reached its full potential for oncology care delivery. As the adoption of PGHD in oncology continues to expand, opportunities exist to enhance their utility. Among the recommendations for cancer centers is establishment of a governance process that includes patients. Researchers should consider determining which PGHD instruments confer the highest value. It is recommended that EHR vendors collaborate with cancer centers to develop solutions for the collection, interpretation, visualization, and use of PGHD.

Submitted May 3, 2021; final revision received August 23, 2021; accepted for publication September 8, 2021. Published online January 18, 2022.

Disclosures: Dr. Patel has disclosed receiving institutional research funding from Merck, Takeda, AstraZeneca, and Janssen, and serving as a consultant for AstraZeneca, Total Health Conferencing/Natera, Boehringer Ingelham, Blueprint Medicines, TerSera Therapeutics LLC, and Sanofi (Genzyme). The remaining authors have disclosed that they have no financial interests, arrangements, or affiliations with the manufacturers of any products discussed in this article or their competitors.

Author contributions: Study concept and design: All authors. Data acquisition, analysis, and interpretation: All authors. Manuscript preparation: Stetson, McCleary, Osterman, Ramchandran, Tevaarwerk, Sugalski, Heinrichs, Weiss.

Correspondence: Jessica Sugalski, MPPA, National Comprehensive Cancer Network, 3025 Chemical Road, Suite 100, Plymouth Meeting, PA 19462. Email: sugalski@nccn.org

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