June 2021
Volume 62, Issue 8
Open Access
ARVO Annual Meeting Abstract  |   June 2021
Social Determinants of Health Data for Patients with Eye Conditions in a Nationwide Data Repository
Terrence Lee; Alison Chan; John McDermott; Bita Shahrvini; Gordon Ye; Amy M. Sitapati; Camille Nebeker; Bharanidharan Radha Saseendrakumar; Sally Liu Baxter
Author Affiliations & Notes
  • Terrence Lee
    Viterbi Family Department of Ophthalmology and Shiley Eye Institute, University of California San Diego, La Jolla, California, United States
    UCSD Health Department of Biomedical Informatics, University of California San Diego, La Jolla, California, United States
  • Alison Chan
    Viterbi Family Department of Ophthalmology and Shiley Eye Institute, University of California San Diego, La Jolla, California, United States
    UCSD Health Department of Biomedical Informatics, University of California San Diego, La Jolla, California, United States
  • John McDermott
    Viterbi Family Department of Ophthalmology and Shiley Eye Institute, University of California San Diego, La Jolla, California, United States
    UCSD Health Department of Biomedical Informatics, University of California San Diego, La Jolla, California, United States
  • Bita Shahrvini
    Viterbi Family Department of Ophthalmology and Shiley Eye Institute, University of California San Diego, La Jolla, California, United States
    UCSD Health Department of Biomedical Informatics, University of California San Diego, La Jolla, California, United States
  • Gordon Ye
    Viterbi Family Department of Ophthalmology and Shiley Eye Institute, University of California San Diego, La Jolla, California, United States
    UCSD Health Department of Biomedical Informatics, University of California San Diego, La Jolla, California, United States
  • Amy M. Sitapati
    UCSD Health Department of Biomedical Informatics, University of California San Diego, La Jolla, California, United States
    Department of Medicine, University of California San Diego, La Jolla, California, United States
  • Camille Nebeker
    Herbert Wertheim School of Public Health and Human Longevity Science, University of California San Diego, La Jolla, California, United States
  • Bharanidharan Radha Saseendrakumar
    Viterbi Family Department of Ophthalmology and Shiley Eye Institute, University of California San Diego, La Jolla, California, United States
    UCSD Health Department of Biomedical Informatics, University of California San Diego, La Jolla, California, United States
  • Sally Liu Baxter
    Viterbi Family Department of Ophthalmology and Shiley Eye Institute, University of California San Diego, La Jolla, California, United States
    UCSD Health Department of Biomedical Informatics, University of California San Diego, La Jolla, California, United States
  • Footnotes
    Commercial Relationships   Terrence Lee, None; Alison Chan, None; John McDermott, None; Bita Shahrvini, None; Gordon Ye, None; Amy Sitapati, None; Camille Nebeker, None; Bharanidharan Radha Saseendrakumar, None; Sally Baxter, None
  • Footnotes
    Support  This study was supported by National Institutes of Health grant DP5OD029610 and an unrestricted departmental grant from Research to Prevent Blindness.
Investigative Ophthalmology & Visual Science June 2021, Vol.62, 58. doi:
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      Terrence Lee, Alison Chan, John McDermott, Bita Shahrvini, Gordon Ye, Amy M. Sitapati, Camille Nebeker, Bharanidharan Radha Saseendrakumar, Sally Liu Baxter; Social Determinants of Health Data for Patients with Eye Conditions in a Nationwide Data Repository. Invest. Ophthalmol. Vis. Sci. 2021;62(8):58.

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Abstract

Purpose : Social determinants of health (SDoH) have been shown to be important in the management of eye diseases, yet these data are frequently missing in electronic health record (EHR) data derived from routine clinical care. We queried a large national database to quantify and characterize SDoH data coverage to inform future research efforts.

Methods : We queried the NIH All of Us data repository, the product of a nationwide prospective cohort study that includes EHR and survey data. Adults with diabetic retinopathy (DR), glaucoma, cataracts, or age-related macular degeneration (AMD) were identified using ICD diagnosis codes and survey responses. The primary outcome of interest was SDoH data coverage, characterized by the proportion of each disease cohort with available data regarding general demographics and socioeconomic factors (Table 1). Variations in SDoH data coverage across cohorts were analyzed with chi-squared testing. Statistical significance was defined as p<0.05.

Results : We identified 23,806 unique adult patients of which 2246 had DR, 13,448 had glaucoma, 6634 had cataracts, and 1478 had AMD. Survey completion rates were high (99.5%-100%) across all cohorts for demographic information, overall health, income, education, and lifestyle. However, healthcare access (12.7%-29.4%), housing (0.7%-1.1%), social isolation (0.2%-0.3%), and food security (0-0.1%) showed significantly lower response rates (Figure 1). Additionally, the proportion of patients reporting healthcare access varied significantly across different disease cohorts (p<0.001), with the lowest in DR patients at 12.7% vs. AMD patients at 29.4%.

Conclusions : SDoH data play a significant role in understanding the risk factors and management for common eye conditions, yet data coverage is highly variable in All of Us. This highlights the need for researchers and clinicians to be proactive about gathering these data in order to assemble complete data sets. Further research is needed to identify barriers to collecting patient data and examine the availability of SDoH data in local EHRs to understand the impact on direct clinical care.

This is a 2021 ARVO Annual Meeting abstract.

 

Table 1. Social determinants of health data coverage for patients with eye conditions in All of Us. Counts <20 cannot be delineated per All of Us data sharing policies.
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Table 1. Social determinants of health data coverage for patients with eye conditions in All of Us. Counts <20 cannot be delineated per All of Us data sharing policies.

Table 1. Social determinants of health data coverage for patients with eye conditions in All of Us. Counts <20 cannot be delineated per All of Us data sharing policies.

Table 1. Social determinants of health data coverage for patients with eye conditions in All of Us. Counts <20 cannot be delineated per All of Us data sharing policies.
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Figure 1. Coverage of social determinants of health data for elements with low survey completion rates.
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Figure 1. Coverage of social determinants of health data for elements with low survey completion rates.

Figure 1. Coverage of social determinants of health data for elements with low survey completion rates.

Figure 1. Coverage of social determinants of health data for elements with low survey completion rates.
View OriginalDownload Slide

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
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Copyright © 2025 Association for Research in Vision and Ophthalmology.
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