Patient-reported outcomes in cancer care — hearing the patient voice at greater volume

Key Points

  • The collection of electronic patient-reported outcome (ePRO) data at the point of care is feasible and usually provides more reliable information on the patient's experience than that reported by clinicians

  • ePRO data are of research quality, and are an important element of learning health-care systems and 'big-data' initiatives

  • To maximize the utility of big data in learning health-care systems, they must include the 'patient's voice' via the incorporation of PROs into routine care

  • To date, big-data initiatives have not adequately included ePROs; this situation can be addressed through data standardization

  • The routine collection of ePRO data simultaneously improves the quality of care for patients and facilitates big-data initiatives

  • Evidence obtained over the past few years indicates that the routine collection and inclusion of ePRO data in patient care improves clinical outcomes

Abstract

Recording of patient-reported outcomes (PROs) enables direct measurement of the experiences of patients with cancer. In the past decade, the use of PROs has become a prominent topic in health-care innovation; this trend highlights the role of the patient experience as a key measure of health-care quality. Historically, PROs were used solely in the context of research studies, but a growing body of literature supports the feasibility of electronic collection of PROs, yielding reliable data that are sometimes of better quality than clinician-reported data. The incorporation of electronic PRO (ePRO) assessments into standard health-care settings seems to improve the quality of care delivered to patients with cancer. Such efforts, however, have not been widely adopted, owing to the difficulties of integrating PRO-data collection into clinical workflows and electronic medical-record systems. The collection of ePRO data is expected to enhance the quality of care received by patients with cancer; however, for this approach to become routine practice, uniquely trained people, and appropriate policies and analytical solutions need to be implemented. In this Review, we discuss considerations regarding measurements of PROs, implementation challenges, as well as evidence of outcome improvements associated with the use of PROs, focusing on the centrality of PROs as part of 'big-data' initiatives in learning health-care systems.

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Acknowledgements

The work of T.W.LB. is supported by an American Cancer Society Mentored Research Scholar Grant (MRSG-15-185-01-PCSM) and a Cambia Health Foundation Sojourns Scholars Award.

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Both authors researched data for the article, discussed the article contents, and wrote, reviewed, and edited the manuscript before submission.

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Correspondence to Thomas W. LeBlanc.

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T.W.LB. previously consulted for Flatiron Health, New York, New York, USA, and has served on an advisory board of the Cancer Support Community, Washington, District of Columbia, USA. A.P.A. is an employee of Flatiron Health.

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LeBlanc, T., Abernethy, A. Patient-reported outcomes in cancer care — hearing the patient voice at greater volume. Nat Rev Clin Oncol 14, 763–772 (2017). https://doi.org/10.1038/nrclinonc.2017.153

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