Abstract

Background: Electronic health records (EHRs) may help enable reliable, rapid data management for many uses, such as facilitating communication of advance care planning (ACP). However, issues with validity and accuracy of EHRs hinder the use of ACP information for practical applications.
Design: We present a cross-sectional pilot study of 433 older adults with cancer from three large health care systems, participating in an ongoing multisite pragmatic trial (4UH3AG060626-02). We compared data extracted from dedicated structured EHR fields for ACP to a chart review of corresponding ACP documentation contained in the medical chart.
Results: Structured ACP data existed for 43.2% of patients and varied by site (25.7% −48.9%). Of the identified structured ACP data elements, 59.2% of recorded elements were correct, 23.7% were incorrect, and 17.1% were duplicates with heterogeneity across sites.
Conclusion: Structured ACP data in EHRs were frequently incorrect. This represents a problem for patients and their families, as well as quality improvement and research efforts. Clinical Trials Registration: NCT03609177.

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cover image Journal of Palliative Medicine
Journal of Palliative Medicine
Volume 24Issue Number 8August 2021
Pages: 1221 - 1225
PubMed: 33826860

History

Published in print: August 2021
Published online: 16 July 2021
Published ahead of print: 7 April 2021
Accepted: 5 March 2021

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Joshua R. Lakin [email protected]
Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Division of Palliative Medicine, Brigham and Women's Hospital, Boston, Massachusetts, USA.
Harvard Medical School, Boston, Massachusetts, USA.
Daniel A. Gundersen
Survey and Data Management Core, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Charlotta Lindvall
Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Division of Palliative Medicine, Brigham and Women's Hospital, Boston, Massachusetts, USA.
Harvard Medical School, Boston, Massachusetts, USA.
Michael K. Paasche-Orlow
Section of General Internal Medicine, Boston Medical Center, Boston University School of Medicine, Boston, Massachusetts, USA.
James A. Tulsky
Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA.
Division of Palliative Medicine, Brigham and Women's Hospital, Boston, Massachusetts, USA.
Harvard Medical School, Boston, Massachusetts, USA.
Elise N. Brannen
School of Medicine, Oregon Health and Science University, Portland, Oregon, USA.
Kathryn I. Pollak
Department of Population Health Sciences, Duke University, Durham, North Carolina, USA.
Cancer Control and Population Sciences, Duke Cancer Institute, Durham, North Carolina, USA.
Danielle Kennedy
Cancer Control and Population Sciences, Duke Cancer Institute, Durham, North Carolina, USA.
Jody-Ann McLeggon
Institute of Health Innovations and Outcomes Research, Feinstein Institutes for Medical Research, Northwell Health, Manhasset, New York, USA.
Jeremiah J. Stout
Mayo Clinic Alix School of Medicine, Rochester, Minnesota, USA.
Angelo Volandes
Harvard Medical School, Boston, Massachusetts, USA.
Department of Medicine, Massachusetts General Hospital, Boston, Massachusetts, USA.

Notes

*
For a list of The ACP-PEACE Investigators, see the Acknowledgment section.
Address correspondence to: Joshua R. Lakin, MD, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, 450 Brookline Avenue D-216A, Boston, MA 02215, USA [email protected]

Authors' Contributions

Study concept and design: J.R.L., D.A.G., M.K.P.-O., J.A.T., and A.V. Acquisition of subjects and/or data and analysis and interpretation of data: all authors. Preparation of article: all authors.

Author Disclosure Statement

Dr. Tulsky is a Founding Director of VitalTalk, a nonprofit organization focused on clinician communication skills training, from which he receives no compensation. Dr. Volandes has a financial interest in the nonprofit foundation Nous Foundation (d/b/a ACP Decisions, 501c3). The nonprofit organization develops ACP video decision aids and support tools. Dr. Volandes' interests were reviewed and are managed by Massachusetts General Hospital and Partners HealthCare in accordance with their conflict of interest policies. None of the other authors have any conflict of interests to disclose.

Funding Information

Research reported in this publication was supported within the National Institutes of Health (NIH) Health Care Systems Research Collaboratory by cooperative agreement UH3AG060626 from the National Institute on Aging. This work also received logistical and technical support from the NIH Collaboratory Coordinating Center through cooperative agreement U24AT009676. The sponsor had no role in the design, data collection, and conduct of this work and did not participate in interpretation of data or preparation of this article.

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