Abstract
This survey study evaluated whether concerns about parental access to online health information through patient portals altered the amount of sensitive health information by young adults and the likelihood of opening a portal account.
Patient access to electronic health information is mandated by the 21st Century Cures Act.1,2 Therefore, institutions have developed policies promoting information access through online portals. However, policies that do not adequately protect confidentiality can result in unintended disclosures of sensitive health information. When the possibility of parental disclosure exists, many adolescents hesitate to share complete health information with clinicians,3,4 potentially resulting in incomplete histories and adverse outcomes (eg, undiagnosed sexually transmitted infections or untreated mental health disorders). We assessed whether concerns surrounding parental access to portal information altered sensitive health information sharing among late adolescents and young adults and the likelihood of opening a portal account.
Methods
Late adolescents and young adults eligible to be included on their parent’s insurance plan (aged 18-26 years) were surveyed through a national online platform from May to August 2023 (eAppendix in Supplement 1). The Weill Cornell Medicine Institutional Review Board approved this survey study. Informed consent was obtained from participants. We followed the STROBE reporting guideline.
Descriptive statistics were generated and differences in responses were assessed with the Pearson χ2 test. Data were analyzed using SAS, version 9.4 (SAS Institute, Inc).
Results
We initially recruited 351 participants. Two did not complete the survey, resulting in a total of 349 respondents (99.4%; mean [SD] age, 23.5 [4.9] years; 158 females [45%], 163 males [47%], 26 members of a gender minority group [7%]), 45 identified as Asian (13%), 67 as Black or African American (19%), 58 as Hispanic, Latino, or Spanish of origin (17%), and 195 as White (56%) individuals. Overall, 171 participants (49%) were on their parent’s insurance.
Overall, 193 of 349 respondents (55%) would change how much sensitive information they shared with health care professionals (physician or nurse) if they thought their parents would see their information through a portal. Results varied for subgroups of participants. Most respondents (18 of 26 [69%]) who identified as members of gender minority groups reported they would change the amount of sensitive information shared. Females were more likely than males to change the amount of information shared (100 of 158 [63%] vs 75 of 163 [46%]; χ2, P < .01) (Table 1). Members of sexual minority groups were more likely than heterosexual respondents to change the amount of information shared (89 of 132 [67%] vs 104 of 214 [48%]; χ2, P < .01) (Table 2).
Table 1. Survey Responses Overall and Stratified by Gender Identity.
| Answer | Respondents, No. (%) | |||
|---|---|---|---|---|
| Overall (n = 349) | Male (n = 163)a | Female (n = 158) | Gender minority (n = 26)b | |
| Question 1: “If you thought that your parents would look at your portal and see all your health information, would that change how much sensitive information you share with your doctor or nurse? (For example, substance use and sexual history)” | ||||
| Yes | 193 (55) | 75 (46) | 100 (63) | 18 (69) |
| No | 112 (32) | 65 (40) | 39 (25) | 6 (23) |
| Not sure | 44 (13) | 23 (14) | 19 (12) | 2 (8) |
| Question 2: “If you thought that your parent would look at the information in your portal, would that make you less likely to open a patient portal?” | ||||
| Yes | 176 (50) | 73 (45) | 87 (55) | 16 (62) |
| No | 121 (35) | 67 (41) | 47 (30) | 5 (19) |
| Not sure | 52 (15) | 23 (14) | 24 (15) | 5 (19) |
Two participants selected “prefer not to respond.”
Includes participants who identify as transgender, nonbinary, or questioning.
Table 2. Responses to Survey Questions by Sexual Identity.
| Answer | Respondents, No. (%) | ||||||
|---|---|---|---|---|---|---|---|
| Heterosexual (n = 214)a | Sexual minority (n = 132)b | Lesbian (n = 13) | Gay (n = 13) | Bisexual (n = 77) | Questioning (n = 5) | Other (n = 24) | |
| Question 1. If you thought that your parents would look at your portal and see all your health information, would that change how much sensitive information you share with your doctor or nurse? (For example, substance use and sexual history) | |||||||
| Yes | 104 (48) | 89 (67) | 10 (77) | 6 (46) | 49 (64) | 4 (80) | 20 (83) |
| No | 82 (38) | 28 (21) | 2 (15) | 4 (31) | 18 (23) | 1 (20) | 3 (13) |
| Not sure | 28 (13) | 15 (11) | 1 (8) | 3 (23) | 10(13) | 0 (0) | 1 (4) |
| Question 2. If you thought that your parent would look at the information in your portal, would that make you less likely to open a patient portal? | |||||||
| Yes | 95 (44) | 80 (61) | 11 (84) | 8 (62) | 47 (61) | 1 (20) | 13 (54) |
| No | 91 (43) | 28 (21) | 2 (15) | 4 (31) | 14 (18) | 2 (40) | 6 (25) |
| Not sure | 28 (13) | 24 (18) | 0 (0) | 1 (8) | 16 (21) | 2 (40) | 5 (21) |
Three participants selected “prefer not to respond.”
Includes participants who identify as lesbian, gay, bisexual, questioning, or other sexual minority group (asexual, aromantic, demisexual, pansexual, and queer).
Overall, 176 respondents (50%) would be less likely to open a portal account if they thought their parents would access their information. Most members of gender minority groups (16 of 26 [62%]) would hesitate to open portal accounts (Table 1). Members of sexual minority groups were less likely than heterosexual respondents to open portal accounts (80 of 132 [61%] vs 95 of 214 [44%]; χ2, P < .01) (Table 2).
Confidentiality concerns highlighted in open text responses include “I don’t want my parents to know I’m a trans person because that would put me in danger. I should be able to receive care I need without being afraid.” Another respondent, in treatment for a mental health disorder related to childhood abuse, feared that if a parent saw the mental health diagnosis in the portal, that parent would become angry, realizing the abuse had been disclosed.
Discussion
We found that concerns about parental access to portal information for late adolescents and young adults were associated with a desire to limit sensitive health information shared with clinicians and hesitation in opening a portal account. Confidentiality concerns were not reported equally across groups; females and members of sexual and gender minority groups had increased concerns. A study limitation is that our online-only sampling approach may limit generalizability.
Portal confidentiality policies vary and are generally developed by multispecialty internal working groups5,6 that may not represent populations with increased confidentiality concerns, which vary based on legal and political environments. To promote patient trust and access to health information, it is vital to prioritize appropriate confidentiality protection in patient portals to provide safe and equitable care.
eAppendix. Supplemental Survey Methods
eReferences
Data Sharing Statement
References
- 1.Ford CA, Bourgeois F, Buckelew SM, et al. Twenty-First Century Cures Act final rule and adolescent health care: Leadership Education in Adolescent Health (LEAH) program experiences. J Adolesc Health. 2021;69(6):873-877. doi: 10.1016/j.jadohealth.2021.09.006 [DOI] [PubMed] [Google Scholar]
- 2.21st Century Cures Act, Pub. L. No. 114-255 (2016). Accessed August 20, 2024. https://www.govinfo.gov/app/details/PLAW-114publ255
- 3.Wisk LE, Gray SH, Gooding HC. I thought you said this was confidential? challenges to protecting privacy for teens and young adults. JAMA Pediatr. 2018;172(3):209-210. doi: 10.1001/jamapediatrics.2017.3927 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Reddy DM, Fleming R, Swain C. Effect of mandatory parental notification on adolescent girls’ use of sexual health care services. JAMA. 2002;288(6):710-714. doi: 10.1001/jama.288.6.710 [DOI] [PubMed] [Google Scholar]
- 5.Sharko M, Wilcox L, Hong MK, Ancker JS. Variability in adolescent portal privacy features: how the unique privacy needs of the adolescent patient create a complex decision-making process. J Am Med Inform Assoc. 2018;25(8):1008-1017. doi: 10.1093/jamia/ocy042 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Sharko M, Jameson R, Ancker JS, Krams L, Webber EC, Rosenbloom ST. State-by-state variability in adolescent privacy laws. Pediatrics. 2022;149(6):e2021053458. doi: 10.1542/peds.2021-053458 [DOI] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
eAppendix. Supplemental Survey Methods
eReferences
Data Sharing Statement