Purpose
Design
Participants
Methods
Main Outcome Measures
Results
Conclusions
Keywords
Abbreviations and Acronyms:
AMD (age-related macular degeneration), CMS (Centers for Medicare and Medicaid Services), DR (diabetic retinopathy), EHR (electronic health record), IOM (Institute of Medicine), SDoH (social determinants of health), UCSD (University of California, San Diego)- Moustafa G.
- Borkar D.
- et al.
Methods
Eligibility Criteria
Cohort Building and Data Extraction in All of Us
Cohort Building and Data Extraction in Local Electronic Health Records
Synthesis and Analysis of Results
Results
General Cohort Characteristics in All of Us
All Adults (n = 298 827) | Diabetic Retinopathy (n = 2246) | Glaucoma (n = 13 448) | Cataract (n = 6634) | Age-Related Macular Degeneration (n = 1478) | |
---|---|---|---|---|---|
Age (yrs) | 52.86 ± 16.73 | 62.18 ± 12.23 | 66.97 ± 12.18 | 69.85 ± 9.89 | 73.59 ± 10.06 |
Sex | |||||
Male | 114 543 (38.33) | 906 (40.34) | 2391 (36.04) | 4643 (34.53) | 529 (35.79) |
Female | 184 284 (61.67) | 1302 (57.97) | 4132 (62.29) | 8587 (63.85) | 925 (62.58) |
Nonbinary or preferred not to respond | 38 (1.69) | 111 (1.67) | 217 (1.61) | 23 (1.56) | |
Race | |||||
Black | 66 302 (22.19) | 671 (30.32) | 1776 (27.12) | 2717 (20.49) | 146 (10.0) |
White | 163 347 (54.66) | 692 (31.27) | 3293 (50.29) | 7888 (59.5) | 1084 (74.25) |
Asian | 10 377 (3.47) | 45 (2.03) | 204 (3.12) | 335 (2.53) | 36 (2.47) |
Other | 7622 (2.55) | 71 (3.21) | 208 (3.18) | 401 (3.02) | 45 (3.08) |
None indicated | 51 179 (17.13) | 734 (33.17) | 1067 (16.3) | 1916 (14.45) | 149 (10.21) |
Ethnicity | |||||
Not Hispanic or Latino | 240 968 (80.64) | 1414 (63.9) | 5303 (80.99) | 11 030 (83.2) | 1291 (88.42) |
Hispanic or Latino | 57 859 (19.36) | 771 (34.84) | 1164 (17.78) | 2074 (15.64) | 158 (10.82) |
Social Determinants of Health Data Coverage in All of Us
Survey Name | Diabetic Retinopathy (N = 2246) | Glaucoma (N = 13448) | Cataract (N = 6634) | Age-Related Macular Degeneration (N = 1478) |
---|---|---|---|---|
Basic Demographics | 2246 (100) | 13 448 (100) | 6634 (100) | 1478 (100) |
Social Isolation | < 20 (< 0.89) | 27 (0.2) | < 20 (< 0.30) | < 20 (< 1.35) |
Overall Health | 2239 (99.69) | 13 411 (99.72) | 6619 (99.77) | 1474 (99.73) |
Income | 2246 (100) | 13 448 (100) | 6632 (99.97) | 1478 (100) |
Housing | < 20 (< 0.89) | 144 (1.07) | 73 (1.1) | < 20 (< 1.35) |
Health Care Access | 286 (12.73) | 3396 (25.25) | 1565 (23.59) | 434 (29.36) |
Food Security | < 20 (< 0.89) | < 20 (< 0.15) | < 20 (< 0.30) | < 20 (< 1.35) |
Education | 2246 (100) | 13 448 (100) | 6634 (100) | 1478 (100) |
Lifestyle | 2235 (99.51) | 13 403 (99.67) | 6612 (99.67) | 1474 (99.73) |
General Cohort Characteristics in Local Electronic Health Records
Diabetic Retinopathy (n = 6616) | Glaucoma (n = 26 793) | Cataract (n = 40 427) | Age-Related Macular Degeneration (n = 6712) | |
---|---|---|---|---|
Age (yrs) | 64.8 ± 13.89 | 69.8 ± 16.95 | 71.4 ± 12.13 | 80.5 ± 12.57 |
Sex | ||||
Male | 3618 (54.69) | 11 831 (44.16) | 17 774 (43.96) | 3995 (59.51) |
Female | 2998 (45.31) | 14 962 (55.84) | 22 653 (56.03) | 2717 (40.47) |
Race | ||||
Black | 443 (6.7) | 1639 (6.12) | 1606 (3.97) | 94 (1.40) |
White | 2795 (42.25) | 14 978 (55.90) | 25 011 (61.86) | 4789 (71.34) |
Asian | 760 (11.49) | 3368 (12.57) | 5014 (12.40) | 602 (8.97) |
Native Hawaiian or other Pacific Islander | 49 (0.74) | 81 (0.30) | 159 (0.39) | <20 (<0.30) |
American Indian or Alaska Native | 40 (0.60) | 95 (0.35) | 133 (0.33) | <20 (<0.30) |
Other race or mixed race | 2159 (32.63) | 4766 (17.79) | 6151 (15.21) | 777 (11.57) |
None indicated | 370 (5.59) | 1867 (6.97) | 2355 (5.83) | 428 (6.37) |
Ethnicity | ||||
Not Hispanic or Latino | 3727 (56.33) | 19 830 (74.01) | 31 653 (78.29) | 5493 (81.83) |
Hispanic or Latino | 2459 (37.17) | 4174 (15.58) | 5194 (12.85) | 494 (7.36) |
Other or unknown | 430 (6.50) | 2790 (10.41) | 3580 (8.86) | 725 (10.81) |
Social Determinants of Health Data Coverage in Local Electronic Health Records
Variable | Diabetic Retinopathy (n = 6616) | Glaucoma (n = 26 793) | Cataract (n = 40 427) | Age-Related Macular Degeneration (n = 6712) |
---|---|---|---|---|
Tobacco use | ||||
Tobacco user | 5889 (89.01) | 22 802 (85.10) | 36 010 (89.07) | 5561 (82.84) |
Packs/day | 1378 (20.83) | 4933 (18.41) | 9072 (22.44) | 1459 (21.73) |
Used years | 1459 (22.05) | 5086 (18.98) | 9459 (23.40) | 1566 (23.33) |
Cigarettes Y/N | 6162 (93.14) | 23 428 (87.44) | 36 741 (90.88) | 5690 (84.76) |
Alcohol use | ||||
Alcohol user | 5352 (80.89) | 21 027 (78.48) | 33 821 (83.66) | 5199 (77.45) |
Oz/wk | 1949 (29.46) | 8640 (32.25) | 15 580 (38.54) | 2464 (36.70) |
Frequency | 1014 (15.33) | 4906 (18.31) | 8690 (21.49) | 1273 (18.96) |
Alcoholic binge | 137 (2.07) | 767 (2.86) | 1406 (3.48) | 218 (3.25) |
Drug use | ||||
IV drug user | 6162 (93.14) | 23 428 (87.44) | 36 741 (90.88) | 5690 (84.76) |
Education | ||||
No. of yrs | 138 (2.09) | 533 (1.99) | 1000 (2.47) | 155 (2.31) |
Level | 124 (1.87) | 367 (1.37) | 729 (1.80) | 107 (1.59) |
Finances | ||||
Financial resource strain | 165 (2.49) | 427 (1.59) | 843 (2.09) | 159 (2.37) |
Social isolation | ||||
Living with spouse | 119 (1.80) | 360 (1.34) | 654 (1.62) | 126 (1.88) |
Phone communication | 111 (1.68) | 345 (1.29) | 656 (1.62) | 116 (1.73) |
Socialization frequency | 109 (1.65) | 344 (1.28) | 659 (1.63) | 112 (1.67) |
Stress level | ||||
Daily stress | 95 (1.44) | 269 (1.00) | 480 (1.19) | 99 (1.47) |
Physical activity | ||||
Days/wk | 219 (3.31) | 1161 (4.33) | 2429 (6.01) | 454 (6.76) |
Min/session | 206 (3.11) | 1097 (4.09) | 2313 (5.72) | 431 (6.42) |
Food insecurity | ||||
Scarcity or worry | 157 (2.37) | 413 (1.54) | 824 (2.04) | 156 (2.32) |
Transportation | ||||
Medical or other transportation need | 120 (1.81) | 343 (1.28) | 703 (1.74) | 122 (1.82) |

Discussion
Summary of Key Findings in All of Us
Summary of Key Findings in Local Electronic Health Records
Improvements in Data Coverage
Limitations and Opportunities for Future Investigations
Conclusions
Supplementary Data
- Supplemental Table A
- Supplemental Table B
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Article info
Publication history
Footnotes
Disclosure(s):
All authors have completed and submitted the ICMJE disclosures form.
The author(s) have made the following disclosure(s): C.N.: Lecturer – American Psychological Association, Dartmouth University, Academy Health; Chair – American Association for the Advancement of Science, Committee on Scientific Freedom and Responsibility; Member – IEEE Organization Governance of Artificial Intelligences Standards Committee
S.L.B.: Consultant – Voxelcloud.io; Lecturer – National Eye Institute, iVista Medical Education
Supported by the National Institutes of Health, Bethesda, Maryland (grant nos.: P30EY022589, 1DP50D029610 [S.L.B.], and 5T15LM01127109 [M.N.]); Research to Prevent Blindness, Inc., New York, New York (unrestricted departmental grant); The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The All of Us Research Program is supported (or funded) by the National Institutes of Health, Office of the Director, Regional Medical Centers, Bethesda, Maryland (grant nos.: 1 OT2 OD026549, 1 OT2 OD026554, 1 OT2 OD026557, 1 OT2 OD026556, 1 OT2 OD026550, 1 OT2 OD 026552, 1 OT2 OD026553, 1 OT2 OD026548, 1 OT2 OD026551, 1 OT2 OD026555).
Presented at: Association for Research in Vision and Ophthalmology Annual Meeting, Virtual, May 1-7, 2021.
HUMAN SUBJECTS: Human subjects were included in this study. This study was approved by the UCSD Institutional Review Board and adheres to the tenets of the Declaration of Helsinki. Individuals participating in All of Us provided written informed consent, and study procedures were approved by the All of Us Institutional Review Board.
No animal subjects were included in this study.
Author Contributions:
Conception and design: Lee, Saseendrakumar, Nayak, Chan, McDermott, Shahrvini, Ye, Sitapati, Nebeker, Baxter
Analysis and interpretation: Lee, Saseendrakumar, Nayak, Chan, McDermott, Shahrvini, Ye, Sitapati, Nebeker, Baxter
Data collection: Lee, Saseendrakumar, Nayak, Chan, McDermott, Shahrvini, Ye, Sitapati, Nebeker, Baxter
Obtained funding: Baxter; Study was performed as part of the authors' regular employment duties. No additional funding was provided.
Overall responsibility: Lee, Saseendrakumar, Nayak, Chan, McDermott, Shahrvini, Ye, Sitapati, Nebeker, Baxter
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