Abstract
This cross-sectional study examines the associations of patient characteristics with accessing immediately released test results and their understand of the results before discussing with a health care practitioner.
Introduction
The 21st Century Cures Act Final Rule requires that test results be released to patients through patient portals as soon as they are available.1 Findings from studies characterizing how patients engage with this expanded access have varied across settings and outcomes.2,3,4,5,6,7,8 Nationally representative estimates can complement existing work by isolating the specific behavior enabled by the Cures Act (viewing immediately released test results before clinician discussion) rather than general portal access, adding a comprehension outcome absent from prior work, and identifying disparities that persist beyond differential offering of access, including the potential role of patient-centered communication and digital literacy.
This study addressed 2 research questions. First, does a patient’s probability of accessing test results through a patient portal before hearing about the results from their health care practitioner vary by sociodemographic characteristics, health status, patient-centered communication, and digital health literacy and engagement? Second, among respondents reporting viewing before discussing with their clinician, does self-rated understanding of those results vary across the same factors?
Methods
This cross-sectional study was deemed exempt from review and informed consent by the New York University institutional review board because the data were deidentified and publicly available. This report followed the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) reporting guideline for cross-sectional studies.
This study used the 2024 Health Information National Trends Survey (representative survey of US adults9) (eMethods in Supplement 1). The analytic sample was restricted to individuals who had been offered online access to their medical records by a health care practitioner and reported having a medical test within the past year. The outcomes were (1) viewing immediately released test results before hearing from a health care practitioner and (2) self-rated understanding of what those results showed and what they meant for the patient’s care. Self-reported sociodemographic factors from the survey instrument included age, sex, race and ethnicity, educational attainment, and annual household income. Race and ethnicity were included given documented disparities in patient portal access and use. Other independent variables included urbanicity, Census region, number of chronic health conditions, personal and family cancer history, medical care discrimination, patient-centered communication, digital literacy, and health-related social media use (eMethods in Supplement 1). Multivariable associations with each outcome were estimated using robust Poisson regression and expressed as adjusted prevalence ratios with 95% CIs.10 All statistical analyses were conducted in R version 4.5.2 (R Project for Statistical Computing), and all tests of statistical significance reflect a 2-sided α = .05.
Results
A total of 4982 respondents were included. After weighting, the estimates generalized to 174 672 964 US adults (28.4% [95% CI, 26.3%-30.7%] aged 50 to 64 years; 51.5% [95% CI, 49.1%-53.9%] female), with 13.2% (95% CI, 11.8%-14.8%) identifying as Hispanic, 4.6% (95% CI, 3.5%-5.9%) as non-Hispanic Asian, 10.2% (95% CI, 9.0%-11.6%)as non-Hispanic Black, and 62.2% (95% CI, 60.0%-64.5%) as non-Hispanic White (Table 1). Regarding the primary outcome measure, 68.6% (95% CI, 66.4%-70.9%) of respondents viewed immediately released test results before hearing from their health care practitioner (unweighted: 3379 of 4982 respondents). Among this population, 6.6% (95% CI, 5.1%-8.1%) rated their understanding of what the immediately released test results showed and what the results meant for their care as poorly (unweighted: 210 respondents). The remaining distribution was 26.8% (95% CI, 24.3%-29.4%) understanding fairly well, 31.7% (95% CI, 29.0%-34.5%) understanding well, and 34.9% (95% CI, 32.1%-37.9%) understanding very well.
Table 1. Descriptive Statistics of the Sample.
| Characteristic | Individuals, unweighted No. (weighted %)a | P valueb | ||
|---|---|---|---|---|
| Overall (weighted N = 174 672 964) | Viewed test results before being contacted by a health care practitioner | |||
| No (weighted n = 54 761 124 [31.4%]) | Yes (weighted n = 119 911 839 [68.6%]) | |||
| Age, y | ||||
| 18-34 | 685 (19.3) | 208 (21.1) | 477 (18.4) | .01 |
| 35-49 | 1000 (26.3) | 249 (21.1) | 751 (28.8) | |
| 50-64 | 1310 (28.4) | 427 (28.7) | 883 (28.3) | |
| ≥65 | 1777 (22.2) | 646 (25.3) | 1131 (20.8) | |
| Missing | 210 (3.7) | 73 (3.8) | 137 (3.7) | |
| Sex assigned at birth | ||||
| Male | 1740 (44.7) | 626 (50.7) | 1114 (42.0) | .002 |
| Female | 3032 (51.5) | 903 (45.3) | 2129 (54.3) | |
| Missing | 210 (3.8) | 74 (4.0) | 136 (3.6) | |
| Race and ethnicity | ||||
| Hispanic | 783 (13.2) | 304 (16.0) | 479 (12.0) | .19 |
| Non-Hispanic Asian | 231 (4.6) | 57 (3.4) | 174 (5.1) | |
| Non-Hispanic Black | 684 (10.2) | 248 (10.9) | 436 (9.9) | |
| Non-Hispanic White | 2800 (62.2) | 826 (59.6) | 1974 (63.4) | |
| Non-Hispanic otherc | 170 (4.4) | 52 (4.1) | 118 (4.5) | |
| Missing | 314 (5.3) | 116 (6.0) | 198 (5.0) | |
| Educational attainment | ||||
| ≤High school | 832 (21.2) | 383 (27.8) | 449 (18.1) | <.001 |
| Some college | 1375 (37.7) | 486 (39.4) | 889 (37.0) | |
| ≥College graduate | 2571 (37.6) | 664 (29.1) | 1907 (41.4) | |
| Missing | 204 (3.5) | 70 (3.7) | 134 (3.4) | |
| Annual household income, $ | ||||
| <50 000 | 1878 (33.8) | 774 (42.6) | 1104 (29.8) | <.001 |
| 50 000-99 999 | 1410 (27.9) | 427 (26.2) | 983 (28.6) | |
| ≥100 000 | 1682 (38.0) | 398 (30.6) | 1284 (41.3) | |
| Missing | 12 (0.4) | 4 (0.6) | 8 (0.3) | |
| Urbanicity | ||||
| Urban | 4702 (93.8) | 1487 (92.3) | 3215 (94.5) | .08 |
| Rural | 280 (6.2) | 116 (7.7) | 164 (5.5) | |
| Census region | ||||
| Northeast | 739 (18.0) | 217 (16.5) | 522 (18.7) | .21 |
| Midwest | 868 (21.9) | 259 (19.5) | 609 (22.9) | |
| South | 2267 (38.5) | 784 (40.7) | 1483 (37.5) | |
| West | 1108 (21.6) | 343 (23.3) | 765 (20.9) | |
| Chronic health conditions, mean (SE), No. | 1.09 (0.03) | 1.09 (0.05) | 1.10 (0.03) | .53 |
| Personal cancer history | ||||
| No | 3971 (86.0) | 1282 (85.6) | 2689 (86.2) | .94 |
| Yes | 838 (11.0) | 265 (11.3) | 573 (10.9) | |
| Missing | 173 (3.0) | 56 (3.1) | 117 (2.9) | |
| Family cancer history | ||||
| No | 921 (18.9) | 295 (20.1) | 626 (18.4) | .09 |
| Not sure | 400 (9.7) | 159 (12.0) | 241 (8.7) | |
| Yes | 3386 (66.6) | 1049 (62.8) | 2337 (68.3) | |
| Missing | 275 (4.7) | 100 (5.1) | 175 (4.6) | |
| Experienced medical care discrimination | ||||
| No | 4095 (82.4) | 1327 (82.1) | 2768 (82.5) | .14 |
| Yes | 867 (17.3) | 263 (17.2) | 604 (17.3) | |
| Missing | 20 (0.3) | 13 (0.7) | 7 (0.1) | |
| Patient-centered communication score, | ||||
| Mean (SE) | 3.34 (0.02) | 3.33 (0.03) | 3.34 (0.02) | .91 |
| Missing | 294 (6.0) | 143 (8.7) | 151 (4.8) | |
| Digital literacy score | ||||
| Mean (SE) | 3.18 (0.02) | 2.94 (0.03) | 3.28 (0.02) | <.001 |
| Missing | 32 (0.4) | 16 (0.8) | 16 (0.3) | |
| Health-related social media use score | ||||
| Mean (SE) | 2.16 (0.02) | 2.05 (0.04) | 2.21 (0.02) | <.001 |
| Missing | 26 (0.5) | 17 (0.8) | 9 (0.3) | |
Counts are unweighted. Percentages, means, and standard errors are weighted.
P value by Rao-Scott χ2 test or design-based Kruskal-Wallis test.
Including American Indian or Alaska Native, Native Hawaiian or Pacific Islander, and multiracial respondents.
Viewing immediately released test results was associated with older age, female sex, higher income, greater number of chronic health conditions, higher digital literacy, and greater health-related social media use (Table 2). Among individuals who viewed test results, a poor comprehension rating was associated with living in the Midwest or South and experiencing medical care discrimination. Greater patient-centered communication and higher digital literacy were associated with a lower prevalence of poor comprehension (Table 2).
Table 2. Disparities in Patient Viewing and Comprehension of Immediately Released Test Results, 2024 Health Information National Trends Surveya.
| Characteristic | Viewing immediately released test results before being contacted by a health care practitioner | Self-rated understanding of immediately released test results as poorly among those who viewed test results | |||
|---|---|---|---|---|---|
| Adjusted PR (95% CI) | P value | Adjusted PR (95% CI) | P value | ||
| Unweighted, No. | 4982 | NA | 3361b | NA | |
| Weighted, No. | 174 672 964 | NA | 119 522 266 | NA | |
| Age, y | |||||
| 18-34 | 1 [Reference] | NA | 1 [Reference] | NA | |
| 35-49 | 1.14 (1.03-1.26) | .01 | 0.67 (0.35-1.27) | .22 | |
| 50-64 | 1.12 (1.01-1.24) | .04 | 0.69 (0.35-1.37) | .29 | |
| ≥65 | 1.19 (1.06-1.33) | .004 | 0.62 (0.29-1.34) | .22 | |
| Sex assigned at birth | |||||
| Male | 1 [Reference] | NA | 1 [Reference] | NA | |
| Female | 1.14 (1.07-1.22) | <.001 | 1.09 (0.70-1.68) | .71 | |
| Race and ethnicity | |||||
| Hispanic | 0.92 (0.82-1.02) | .11 | 1.27 (0.65-2.51) | .48 | |
| Non-Hispanic Asian | 1.12 (0.98-1.29) | .10 | 0.87 (0.40-1.89) | .72 | |
| Non-Hispanic Black | 0.96 (0.86-1.06) | .41 | 0.61 (0.26-1.45) | .27 | |
| Non-Hispanic White | 1 [Reference] | NA | 1 [Reference] | NA | |
| Non-Hispanic otherc | 1.02 (0.87-1.20) | .78 | 1.02 (0.36-2.86) | .97 | |
| Educational attainment | |||||
| ≤High school | 1 [Reference] | NA | 1 [Reference] | NA | |
| Some college | 1.05 (0.94-1.17) | .37 | 1.11 (0.58-2.15) | .74 | |
| ≥College graduate | 1.09 (0.98-1.22) | .10 | 1.13 (0.55-2.34) | .74 | |
| Annual household income, $ | |||||
| <50 000 | 1 [Reference] | NA | 1 [Reference] | NA | |
| 50 000 to 99 999 | 1.12 (1.02-1.22) | .02 | 0.63 (0.36-1.12) | .12 | |
| ≥100 000 | 1.13 (1.03-1.24) | .008 | 1.31 (0.72-2.39) | .37 | |
| Urbanicity | |||||
| Urban | 1 [Reference] | NA | 1 [Reference] | NA | |
| Rural | 0.91 (0.78-1.05) | .19 | 0.99 (0.45-2.17) | .99 | |
| Census region | |||||
| Northeast | 1 [Reference] | NA | 1 [Reference] | NA | |
| Midwest | 0.99 (0.90-1.10) | .91 | 3.29 (1.54-7.04) | .002 | |
| South | 0.93 (0.85-1.01) | .09 | 2.49 (1.22-5.06) | .01 | |
| West | 0.92 (0.84-1.02) | .13 | 1.67 (0.77-3.60) | .19 | |
| Chronic health conditions, per 1-unit increase | 1.04 (1.01-1.07) | .01 | 1.10 (0.93-1.29) | .28 | |
| Personal cancer history | |||||
| No | 1 [Reference] | NA | 1 [Reference] | NA | |
| Yes | 1.04 (0.96-1.13) | .36 | 0.64 (0.36-1.13) | .12 | |
| Family cancer history | |||||
| No | 1 [Reference] | NA | 1 [Reference] | NA | |
| Not sure | 0.95 (0.82-1.10) | .48 | 1.03 (0.49-2.19) | .93 | |
| Yes | 1.02 (0.94-1.11) | .57 | 0.96 (0.57-1.62) | .88 | |
| Experienced medical care discrimination | |||||
| No | 1 [Reference] | NA | 1 [Reference] | NA | |
| Yes | 0.95 (0.87-1.04) | .25 | 1.69 (1.06-2.70) | .03 | |
| Patient-centered communication, per 1-point increase | 0.98 (0.93-1.03) | .41 | 0.50 (0.37-0.67) | <.001 | |
| Digital literacy, per 1-point increase | 1.24 (1.17-1.32) | <.001 | 0.63 (0.46-0.85) | .003 | |
| Health-related social media use, per 1-point increase | 1.07 (1.03-1.13) | .003 | 0.79 (0.58-1.08) | .14 | |
Abbreviations: NA, not applicable; PR, prevalence ratio.
Results were pooled across 10 imputed datasets.
Eighteen individuals with available data on the primary outcome and missing data on the secondary outcome were excluded.
Includes American Indian or Alaska Native, Native Hawaiian or Pacific Islander, and multiracial respondents.
Discussion
This nationally representative cross-sectional study yielded 2 key findings: (1) viewing immediately released test results was associated with sociodemographic characteristics, number of chronic health conditions, digital literacy, and health-related social media use and (2) among those who viewed their results, a poor comprehension rating was associated with living in the Midwest or South and experiencing medical care discrimination. In addition, greater patient-centered communication and higher digital literacy were associated with a lower prevalence of poor comprehension. The 21st Century Cures Act Final Rule has restructured the traditional pathway from test result release to patient-clinician discussion.1 These findings suggest that while the Cures Act’s behavioral goal of expanded patient access is being realized, a subset of patients who view results before being contacted by their health care practitioner reported poor understanding of what they saw. Substantial comprehension gaps across Census regions as well as levels of patient-centered communication and digital literacy warrant attention from physicians returning results, health care systems, software developers, health information technology vendors, and legislators.
This analysis has limitations. The primary outcome measure limited inferences about habitual behavior or frequency. The secondary outcome was a single self-rated item that bundled 2 distinct constructs. All measures were self-reported and may be subject to recall and social desirability bias. The cross-sectional design does not allow for causal inferences, and observed associations may be subject to residual confounding. Consistent with the exploratory framing of this analysis, no multiple-comparison correction was applied, and some significant findings may reflect chance. Furthermore, the Health Information National Trends Survey did not identify respondents’ health systems, so this analysis cannot account for system-level variation in immediate-release implementation.
eMethods.
eReferences.
Data Sharing Statement
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Associated Data
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Supplementary Materials
eMethods.
eReferences.
Data Sharing Statement
