Collecting patient-reported outcome measures in the electronic health record: Lessons from the NIH pragmatic trials Collaboratory

Christina K. Zigler; Oluwaseun Adeyemi; Andrew D. Boyd; Jordan M. Braciszewski; Andrea Cheville; Allison M. Cuthel; Dana L. Dailey; Guilherme Del Fiol; Miriam O. Ezenwa; Keturah R. Faurot; Morgan Justice; P. Michael Ho; Katherine Lawrence; Keith Marsolo; Crystal L. Patil; Hyung Paek; Rachel L. Richesson; Karen L. Staman; Judith M. Schlaeger; Emily C. O'Brien

doi:10.1016/j.cct.2023.107426

Collecting patient-reported outcome measures in the electronic health record: Lessons from the NIH pragmatic trials Collaboratory

Christina K. Zigler, Oluwaseun Adeyemi, Andrew D. Boyd, Jordan M. Braciszewski, Andrea Cheville, Allison M. Cuthel, Dana L. Dailey, Guilherme Del Fiol, Miriam O. Ezenwa, Keturah R. Faurot, Morgan Justice, P. Michael Ho, Katherine Lawrence, Keith Marsolo, Crystal L. Patil, Hyung Paek, Rachel L. Richesson, Karen L. Staman, Judith M. Schlaeger, Emily C. O'Brien

Physical Medicine and Rehabilitation

Research output: Contribution to journal › Article › peer-review

Abstract

The NIH Pragmatic Trials Collaboratory supports the design and conduct of 27 embedded pragmatic clinical trials, and many of the studies collect patient reported outcome measures as primary or secondary outcomes. Study teams have encountered challenges in the collection of these measures, including challenges related to competing health care system priorities, clinician's buy-in for adoption of patient-reported outcome measures, low adoption and reach of technology in low resource settings, and lack of consensus and standardization of patient-reported outcome measure selection and administration in the electronic health record. In this article, we share case examples and lessons learned, and suggest that, when using patient-reported outcome measures for embedded pragmatic clinical trials, investigators must make important decisions about whether to use data collected from the participating health system's electronic health record, integrate externally collected patient-reported outcome data into the electronic health record, or collect these data in separate systems for their studies.

Original language	English (US)
Article number	107426
Journal	Contemporary Clinical Trials
Volume	137
DOIs	https://doi.org/10.1016/j.cct.2023.107426
State	Published - Feb 2024

Keywords

PRO measures
PROM
Pain
Pragmatic clinical trials

ASJC Scopus subject areas

Pharmacology (medical)

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10.1016/j.cct.2023.107426

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Zigler, C. K., Adeyemi, O., Boyd, A. D., Braciszewski, J. M., Cheville, A., Cuthel, A. M., Dailey, D. L., Del Fiol, G., Ezenwa, M. O., Faurot, K. R., Justice, M., Ho, P. M., Lawrence, K., Marsolo, K., Patil, C. L., Paek, H., Richesson, R. L., Staman, K. L., Schlaeger, J. M., & O'Brien, E. C. (2024). Collecting patient-reported outcome measures in the electronic health record: Lessons from the NIH pragmatic trials Collaboratory. Contemporary Clinical Trials, 137, Article 107426. https://doi.org/10.1016/j.cct.2023.107426

Zigler, CK, Adeyemi, O, Boyd, AD, Braciszewski, JM, Cheville, A, Cuthel, AM, Dailey, DL, Del Fiol, G, Ezenwa, MO, Faurot, KR, Justice, M, Ho, PM, Lawrence, K, Marsolo, K, Patil, CL, Paek, H, Richesson, RL, Staman, KL, Schlaeger, JM & O'Brien, EC 2024, 'Collecting patient-reported outcome measures in the electronic health record: Lessons from the NIH pragmatic trials Collaboratory', Contemporary Clinical Trials, vol. 137, 107426. https://doi.org/10.1016/j.cct.2023.107426

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title = "Collecting patient-reported outcome measures in the electronic health record: Lessons from the NIH pragmatic trials Collaboratory",

abstract = "The NIH Pragmatic Trials Collaboratory supports the design and conduct of 27 embedded pragmatic clinical trials, and many of the studies collect patient reported outcome measures as primary or secondary outcomes. Study teams have encountered challenges in the collection of these measures, including challenges related to competing health care system priorities, clinician's buy-in for adoption of patient-reported outcome measures, low adoption and reach of technology in low resource settings, and lack of consensus and standardization of patient-reported outcome measure selection and administration in the electronic health record. In this article, we share case examples and lessons learned, and suggest that, when using patient-reported outcome measures for embedded pragmatic clinical trials, investigators must make important decisions about whether to use data collected from the participating health system's electronic health record, integrate externally collected patient-reported outcome data into the electronic health record, or collect these data in separate systems for their studies.",

keywords = "PRO measures, PROM, Pain, Pragmatic clinical trials",

author = "Zigler, {Christina K.} and Oluwaseun Adeyemi and Boyd, {Andrew D.} and Braciszewski, {Jordan M.} and Andrea Cheville and Cuthel, {Allison M.} and Dailey, {Dana L.} and {Del Fiol}, Guilherme and Ezenwa, {Miriam O.} and Faurot, {Keturah R.} and Morgan Justice and Ho, {P. Michael} and Katherine Lawrence and Keith Marsolo and Patil, {Crystal L.} and Hyung Paek and Richesson, {Rachel L.} and Staman, {Karen L.} and Schlaeger, {Judith M.} and O'Brien, {Emily C.}",

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year = "2024",

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doi = "10.1016/j.cct.2023.107426",

language = "English (US)",

volume = "137",

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AU - Braciszewski, Jordan M.

AU - Cheville, Andrea

AU - Cuthel, Allison M.

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AU - Ezenwa, Miriam O.

AU - Faurot, Keturah R.

AU - Justice, Morgan

AU - Ho, P. Michael

AU - Lawrence, Katherine

AU - Marsolo, Keith

AU - Patil, Crystal L.

AU - Paek, Hyung

AU - Richesson, Rachel L.

AU - Staman, Karen L.

AU - Schlaeger, Judith M.

AU - O'Brien, Emily C.

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Collecting patient-reported outcome measures in the electronic health record: Lessons from the NIH pragmatic trials Collaboratory

Abstract

Keywords

ASJC Scopus subject areas

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