Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021 Jul 1;113(7):924-932.
doi: 10.1093/jnci/djaa210.

Assessing Cancer History Accuracy in Primary Care Electronic Health Records Through Cancer Registry Linkage

Megan Hoopes  1 , Robert Voss  1 , Heather Angier  2 , Miguel Marino  2 , Teresa Schmidt  1 , Jennifer E DeVoe  2 , Jeffrey Soule  3 , Nathalie Huguet  2
Affiliations

Assessing Cancer History Accuracy in Primary Care Electronic Health Records Through Cancer Registry Linkage

Megan Hoopes et al. J Natl Cancer Inst. .

Abstract

Background: Many cancer survivors receive primary care in community health centers (CHCs). Cancer history is an important factor to consider in the provision of primary care, yet little is known about the completeness or accuracy of cancer history data contained in CHC electronic health records (EHRs).

Methods: We probabilistically linked EHR data from more than1.5 million adult CHC patients to state cancer registries in California, Oregon, and Washington and estimated measures of agreement (eg, kappa, sensitivity, specificity). We compared demographic and clinical characteristics of cancer patients as estimated by each data source, evaluating distributional differences with absolute standardized mean differences.

Results: A total 74 707 cancer patients were identified between the 2 sources (EHR only, n = 22 730; registry only, n = 23 616; both, n = 28 361). Nearly one-half of cancer patients identified in registries were missing cancer documentation in the EHR. Overall agreement of cancer ascertainment in the EHR vs cancer registries (gold standard) was moderate (kappa = 0.535). Cancer site-specific agreement ranged from substantial (eg, prostate and female breast; kappa > 0.60) to fair (melanoma and cervix; kappa < 0.40). Comparing population characteristics of cancer patients as ascertained from each data source, groups were similar for sex, age, and federal poverty level, but EHR-recorded cases showed greater medical complexity than those ascertained from cancer registries.

Conclusions: Agreement between EHR and cancer registry data was moderate and varied by cancer site. These findings suggest the need for strategies to improve capture of cancer history information in CHC EHRs to ensure adequate delivery of care and optimal health outcomes for cancer survivors.

PubMed Disclaimer

Figures

Figure 1.
Figure 1.
Diagram of electronic health record (EHR) linkage to California, Oregon, and Washington state cancer registries and resulting subgroups for validation analyses.
Figure 2.
Figure 2.
Percentage of leading cancers identified by source of ascertainment. Total number of cases ascertained from either source presented in parentheses. Width of bars is proportional to this combined case count. EHR = electronic health record.
Figure 3.
Figure 3.
Distribution of year of diagnosis and age at diagnosis among matched cases, electronic health record (EHR) vs cancer registry. Comparisons include matched patient*sites (same cancer site and patient in both EHR and registry data), n = 27 026. We imputed mid-year for dates where only the year was known and mid-month if day was unknown.
See this image and copyright information in PMC

References

    1. Leach CR, Weaver KE, Aziz NM, et al.The complex health profile of long-term cancer survivors: prevalence and predictors of comorbid conditions. J Cancer Surviv. 2015;9(2):239–251. - PubMed
    1. Institute of Medicine and National Research Council. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press; 2006.
    1. Pollack LA, Adamache W, Ryerson AB, Eheman CR, Richardson LC.. Care of long‐term cancer survivors: physicians seen by Medicare enrollees surviving longer than 5 years. Cancer. 2009;115(22):5284–5295. - PubMed
    1. Roy S, Vallepu S, Barrios C, Hunter K.. Comparison of comorbid conditions between cancer survivors and age-matched patients without cancer. J Clin Med Res. 2018;10(12):911–919. - PMC - PubMed
    1. Krist AH, Beasley JW, Crosson JC, et al.Electronic health record functionality needed to better support primary care. J Am Med Inform Assoc. 2014;21(5):764–771. - PMC - PubMed

Publication types