Patient Portal Privacy: Perspectives of Adolescents and Emerging Adults Living with HIV and the Parental/Guardian Role in Supporting Their Care

Abstract

Background Increasing the percentage of people living with human immunodeficiency virus (HIV), including youth, who are virally suppressed to 95% is an overall goal of the ending the HIV epidemic initiative. While patient portals have become ubiquitous, questions remain about how best to operationalize parental/guardian access to youth's patient portals in alignment with optimizing HIV care outcomes and patient preferences. This qualitative study focuses on understanding perspectives among youth with HIV (YHIV) about parental access to patient portals.

Methods Eligible participants were YHIV aged 13 to 25 years receiving care at an urban academic hospital. Semistructured individual/paired interviews were conducted between May 2022 and March 2023. Participants were asked to discuss thoughts on parental access to patient portals, and roles parents/guardians have in supporting their HIV care. Semistructured interviews were conducted with adolescent and emerging adult health care workers (HCWs) to gain perspectives on YHIV emergent themes. Audio-recorded interviews were transcribed verbatim, and we conducted thematic analysis using an inductive approach to identify codes and themes.

Results Sixteen YHIV and four HCWs participated in interviews. Parental roles in coordinating HIV care ranged from supporting YHIV needs for transportation, acquiring, and taking medications, to not having any role at all. Participants shared heterogeneous perspectives about their openness to share patient portal access with their parents/guardians. Perspectives were not strictly congruent along lines of participant age or parental roles in helping youth to manage HIV care. Sharing passwords emerged both as a pathway that YHIV grant access to their accounts and a source of confusion for clinicians when parents/guardians send messages using their child's account.

Conclusion Findings suggest HCWs should initiate conversations with YHIV patients to determine preferences for parental/guardian access to their patient portal, educate on proxy access, and explain the extent of medical information that is shared with proxy accounts, regardless of age and perceived parental involvement in HIV care.

Keywords

patient portal - electronic health records and systems - adolescent medicine - infectious disease - families of patients - patients with chronic illness or special needs - personal health records

Background and Significance

Adolescents and Emerging Adults

Human immunodeficiency virus (HIV) is a chronic disease impacting 28,846 adolescents and emerging adults (AEA) aged 13 to 24 in the United States.[1] The ending the HIV epidemic in the U.S. (EHE) initiative focuses on increasing viral suppression among people living with HIV to 95% by 2025.[2] However, among AEA, only 63% of these youth with HIV (YHIV) are virally suppressed.[3] Patient portals allow YHIV to perform HIV care-related functions such as messaging the health care team, reviewing clinical notes, checking laboratory results, scheduling appointments, and requesting HIV medication refills.[4] However, leveraging the patient portal to achieve EHE goals may be limited by the fact that YHIV populations are more likely to be Black/African American, have lower health literacy, and have lower socioeconomic status, all factors that have been associated with lower portal access.[5] [6] [7] Still, AEA report that reading notes in the portal is meaningful for feeling engaged in care, improving the relationship with their health care team, and that the portal can support behaviors related to medication adherence and improving HIV care.[8] [9] Additionally, parents/guardians that provide social support to YHIV may also consider using the patient portal helpful with coordinating their child's HIV care.[10]

Adolescence and emerging adulthood are characterized by growing independence, self-determination and high rates of behavioral health risks, exacerbation of chronic health conditions, and low health care utilization.[11] [12] [13] [14] [15] The social support, supervision, and care coordination provided by parents/guardians to YHIV by accessing their patient portal can mitigate gaps in health care engagement and antiretroviral therapy (ART) adherence.[10] However, when such caregivers have access to the portal it presents challenges to preserving the patient confidentiality of YHIV.[16] In the next section we define patient portal proxy access, delineate procedural differences among AEA patients, and discuss risks to patient privacy.

Proxy Accounts and Minor Privacy Laws

Patient portal proxies refer to individuals, such as parents, guardians, or other caregivers, allowed to access a patient's health information through the portal using a unique secure login.[17] When a child is under 13 years old, the patient portal account is typically a parent/guardian proxy-only account. Meaning, the parent/guardian proxy, and not the patient, is the primary account manager. In many states, adolescent minors between 13 and 17 years of age may consent to sexual health services and likewise are enabled to be the primary account manager of their portal.[18] Health care institutions may delegate the patient health information available within parent/guardian proxy accounts. For example, sexually transmitted infection (STI) laboratory results, medications, and previously sent messages can be disabled or reduced.[19] However, such intended privacy protections are compromised when parents/guardians do not use a proxy account, but instead use the patient's login credentials to access the patient's portal. Such improper authentications are not uncommon, a study across three institutions found that 64 to 76% of accounts with outbound messages were accessed by guardians.[20] This is concerning since about 7% of AEA would not seek sexual or reproductive health care if they believed their parents might find out about it.[21]

Unless incapacitated, patients 18 years and older may voluntarily elect to authorize patient proxy access to others, including parents/guardians.[19] Proxy access in these cases may also be revoked by the patient. Since proxy access is voluntary for adults, many studies neglect to examine privacy issues for youth who are emerging adults that are not quite independent; particularly those that have chronic conditions and whose parents may still provide care coordination, social support, and health insurance coverage. Furthermore, there is little qualitative research providing insight into the perceptions and preferred parameters of parental/guardian access to patient portals among both AEA living with HIV.

Study Purpose

To address the above-mentioned research gaps, the current study uses qualitative research methods to examine perspectives about patient portal privacy in the context of AEA with HIV and the roles of parents/guardians in supporting their HIV care.

Methods

Study Overview

This study was a supplemental study to a randomized controlled trial investigating a technology-enhanced directly observed therapy and community-based nursing intervention for increasing ART adherence among YHIV aged 13 to 25 years (identifier: NCT 03600103).[22] Eligible participants for the current study were aged 13 to 25 years, living with HIV, and receiving care at the study site's AEA clinic, and had consented to be contacted for future studies.

A team of trained research assistants recruited YHIV participants using patient lists from the parent study. Semistructured individual or paired in-depth interviews were conducted among YHIV participants between May 2022 and March 2023. During the interview, we asked participants to discuss the role of their parents/guardians in supporting HIV care and how they felt about parents/guardians having access to their portal. Participants completed an online postinterview survey to collect information on age, race, and use of patient portal functions. Health care workers (HCWs) at the study-affiliated AEA clinic were purposively recruited to participate in interview sessions to add HCW perspectives to what was shared by YHIV. All interviews were conducted using Zoom, lasting between 30 and 60 minutes. Sessions were audio-recorded and transcribed verbatim. Saturation was reached when no new themes were achieved beyond two interviews. Participants received a Visa gift card; 65.00 USD for patients and 50.00 USD for HCW. This study was approved by the institutional review board (approval no.: IRB00299232) and informed consent was obtained according to its ethical standards.

Data Analysis

Thematic analysis methods were selected to examine YHIV perspectives and practices about parental/guardian portal access, due to its utility in seeking to understand experiences, thoughts, and behaviors.[23] Using an inductive approach, the principal investigator developed a master codebook and two researchers independently coded the transcripts in Atlas.ti. We used MS Excel to organize salient topics and themes from HCW interviews. The research team routinely met to iteratively discuss and refine emergent codes, identify themes, and highlight congruency and contradictions in the data. Differing interpretations of the data were discussed at length between researchers and agreement reached on all topics.

Results

Sample Characteristics

In total, 16 YHIV and four HWCs: one physician (HCW1), two nurse practitioners (HCW2 and HCW3), and one front desk staff (HCW4) participated in interviews. YHIV ages ranged from 13 to 25 years, 15 identified as Black/African American, and 10 acquired HIV perinatally (PHIV; [Table 1]). Most sampled participants considered parental/guardian access as acceptable (10/16); parental/guardian access was unacceptable among 4 of 16 participants. Three participants had parent/guardian proxy accounts; two had the proxy-only accounts in use, whereas the other proxy account was inactive. Participants described three modalities for parental/guardian access to their portal: (1) proxy access accounts; (2) shared viewing (i.e., viewing together in the same physical or virtual space without disclosing passwords); or (3) sharing passwords with the parent/guardian.

Table 1 Sample characteristics among youth living with HIV aged 13 to 25 years, N = 16

I.D.	Sex	Age (y)	Transmission type[a]	Most recent viral load (copies/mL)	Date of viral load	Ever used portal	Parent access acceptable	Proxy account status
P01	Female	21	WSM	< 20	October 18, 2022	Yes	No	No proxy
P02	Female	21	Perinatal	45.9	April 8, 2022	Yes	No	No proxy
P03	Female	22	Unknown	< 20	August 12, 2022	Yes	Missing Data	No proxy
P04	Female	20	Perinatal	52.2	August 4, 2022	Yes	Yes	No proxy
P05	Male	25	MSM	< 20	August 15, 2022	Yes	Yes	No proxy
P06	Male	22	Perinatal	< 20	April 28, 2022	Yes	Yes	No proxy
P07	Male	20	MSM	< 20	June 22, 2022	Yes	No	No proxy
P08	Male	25	MSM	< 20	September 5, 2022	Yes	No	No proxy
P09	Female	20	Perinatal	< 20	August 5, 2022	Yes	Yes	No proxy
P10	Female	23	WSM	< 20	August 23, 2022	Yes	Yes	No proxy
P11	Female	21	Perinatal	5,820	September 29, 2022	Yes	Yes	No proxy
P12	Female	16	Perinatal	< 20	November 4, 2022	Yes	Inapplicable	No proxy
P13	Female	22	Perinatal	< 20	November 7, 2022	Yes	Yes	No proxy
P14	Female	13	Perinatal	< 20	August 11, 2023	No	Yes	Yes (proxy only)
P15	Female	16	Perinatal	< 20	August 22, 2022	No	Yes	Yes (inactive)
P16	Female	13	Perinatal	< 20	February 8, 2023	No	Yes	Yes (proxy only)

^a MSM and WSM refer to men who have sex with men and women who have sex with men, respectively.

^b Participants of the two paired interviews included (P07 and P08) and (P12 and P13)

Portal Functions Used

Participants reported the use of multiple portal functions (13/16). Among users, the most common uses were to check STI laboratory test results, to check other laboratory test results, and to check medical history (10/13). Other uses included sending messages to HCWs (9/13), scheduling appointments (9/13), reviewing clinical notes (7/13), and requesting medication refills (7/13).

Thematic Analysis

Several themes emerged from the two primary focus areas of the study: (1) parental role in HIV management and (2) parental access to the patient's portal. The role of parents in helping participants manage living with HIV ranged from strong reliance to parents/guardians not having any role at all. Similarly, there were various degrees to which our study participants were willing to provide access to the portal. Some preferred that parents/guardians maintain full access; some were okay with partial access, whereas others did not want to give any access.

Parental and Guardian Role in HIV Management

Dynamic Support

Some participants reported that their parents/guardians have dynamic roles in supporting their HIV management and overall wellness ([Table 2]). When asked about her parents, P15, a 16-year-old participant, indicated that she considers her parents to have a significant role in helping her manage living with HIV.

Table 2 Themes and selected quotations for youth with HIV perspectives on parental/guardian roles in HIV management for the participant

Theme	Quotations
Dynamic support	“Oh, my mom helps. I had a real problem staying on top of it—it was bad. Taking my medications. If I had it myself, I wouldn't take it. So, my mom would have it and give it to me when I needed to take it.” P04
	“They have a big role. They take me to the hospital; they go get my pills; they make sure I'm okay and make sure my medicines are on track.” P15
	“Like she would tell me like, even on your worse days, don't forget, like keep taking medicine, so I was like okay. I keep taking them, no matter what I do I just keep taking on it, you know. […] She tells me to keep going even if I am sad about it.” P02
	“Definitely financial support. I'm on their insurance so that helps a lot. They are always like giving me money for like co-pays or whatever.” P09
Transitioning of reliance	“[…] it was more so when I was younger; they were on top of that. Now that I'm more like older they aren't really on top of it as much. They just remind me here and there, and they just, you know, trust that I'll take care of myself.” P12
	“So, my mom would have [my medications] and give it to me when I needed to take it. But then I was going off to college and my doctor was like well, you need to start getting into the habit of you know, taking your medicine.” P04
Independence	“They haven't helped me with anything. I've done everything on my own.” P05
	“I tell people all the time; I rather die than you help me out.” P01

They have a big role. They take me to the hospital; they go get my pills; they make sure I'm okay and make sure my medicines are on track.

This comment demonstrates the multiple capacities in which some patients may rely on parents/guardians, including connecting with access to care through transportation, delivery of ART medications, following up on ART adherence, and a nurturing aspect to ensure that they are okay. Another participant, P02, described that as a younger child, her mother often encouraged her to take ART medications by saying, “No matter how you feel, take your medication.” P02 also shared that her mother did not disclose to her that she had perinatally acquired HIV until late adolescence and she had no awareness of why she was taking the medications.

Transitioning of Reliance

For PHIV participants, parents/guardians were described to have roles in supporting their HIV care in childhood prior to adolescence and emerging adulthood. Some PHIV participants described taking on more responsibility with their care as they grew older from adolescence into emerging adulthood. For example, P04 recalled counsel from her doctor to take more responsibility for keeping up with her medication.

But then I was going off to college and my doctor was like well, you need to start getting into the habit of, you know, taking your medicine.

This comment demonstrates an expectation for YHIV to transition from relying on parents/guardians for HIV care support to becoming more self-reliant as they get older.

Independence

A few participants explicitly described themselves as “on my own” and without parental support for managing their HIV care. P05 expressed a notion of solitude in supporting his own wellness since acquiring HIV.

They haven't helped me with anything. I've done everything on my own. I fought on my own, I cried on my own, all that, by myself.

Reasons for independence were contextual. For example, P01 described herself as independent and avoids asking others for help. For her, accepting help from others leaves the potential for them to “throw it up at [her] face” later. Similarly, P02 distanced herself from parental support due to conflict. Her mother's decision to delay HIV disclosure until late adolescence created tension and mistrust to what was once a supportive relationship in encouraging ART adherence.

Parental Access to the Patient Portal

Consent

Many participants reported amenability to parental/guardian access to their portals ([Table 3]). These participants were also comfortable with parents/guardians having uninhibited access. For example, in the case of P14, aged 13 years, her portal account is proxy-only, registered, and linked solely to her father's email account. Some participants described sharing their passwords with parents/guardians to allow them to gain access.

Table 3 Themes and selected quotations for youth with HIV perspectives on parental access to the participant's patient portal

Theme	Quotations
Consent	“I don't have a problem with them logging in.” P10
	“I gave my mom permission because you can give your parents' permission on the APP […] so being able to share your password with your parents, give them consent.” P13
Confidentiality	“No, she don't need my business. I ain't in her business; she don't need to be in mine.” P01
	M: “Are there things in your patient portal that you wouldn't want to share with your mom?” P15: “Yeah, because, like last time I had this meeting with um, a lady And we were talking about stuff…”
	“I wouldn't feel like that would be a good thing, I mean but I've never thought about having her in my [portal], so, because of family [..], no.” P02
Barriers	“My mom is not very good at technology, and I don't think she wants to be good at technology […] So the [portal] thing, she thinks of it as a hassle.” P12
	“If he has it would be a good idea for him to use it, […] Like he can go through a PlayStation 4 console all day he wants, but he doesn't know how to go through the [portal] and how to communicate with doctors and whatnot.” P06
	“Anything she wants to know, she has like authorization over my records to she would just call them. […] So she if she wanted to know something she would just call; she wouldn't use an APP. She is more comfortable calling.” P04

P05, aged 25 years, who expressed his independence, described his considerations for consenting to parent/guardian access to his portal as the ability for his parents to know what is going on with his medical care in case of an emergency or “if something happened” to him. These quotations highlight that YHIV who are over 18 or whose parents/guardians do not have a role in helping them manage living with HIV, may be open to their parents/guardians having full access to their portal.

Confidentiality

Some participants described confidentiality as a reason for not providing portal access to their parents. For example, P01 emphatically expressed the need for privacy between her and her mother, stating “I ain't in her business; she don't need to be in mine.” For participants like P01 and P02, confidentiality emphasizes the boundaries maintained with their parents/guardians in receiving support related to HIV care ([Table 3]).

P15 described her parents as having a significant role in helping her manage living with HIV and said that there is some information in her health records that she would prefer to shield from her parents/guardians ([Table 3]). The presence of P15's mother during the interview may have contributed to her reluctance to elaborate on the matter. Yet the quote highlights that an adolescent patient may desire patient–clinician confidentiality and may adjust what is disclosed to an HCW given their understanding of whether this information will be shared with a parent/guardian. Together quotations within the theme of confidentiality demonstrate the importance of YHIV having the ability to control the types of health information that are private.

Barriers to Parental Portal Access

Some patients described their parents as unable to navigate the patient portal. For example, P12, who has taken on much of the responsibility of managing her HIV care as she got older, is okay with her mother accessing her portal but also considers her mother as “not very good with technology” and thinks of MyChart as a “hassle.” On the other hand, P06, whose mother passed away, expresses frustrations with his father's inability to navigate MyChart for the sake of his younger special needs brother living with HIV ([Table 3]).

Like he can go through a PlayStation 4 console all day he wants, but he doesn't know how to go through the MyChart and how to communicate with doctors.

Quotations highlight the importance of patient portal ineptitude as a barrier to parental/guardian access and how methods other than the portal may be preferred by parents/guardians for connecting with information and communicating with HCWs.

Health Care Worker Perspectives

Facilitating HIV Care with Families

The benefit of parental/guardian access to portals was described as facilitating HIV care support for YHIV. HCW1 expressed that the goal of parental/guardian MyChart access is to “help organize the youth and their care,” such as being informed about upcoming appointments and ensuring medications are refilled ([Table 4]). How the parent/guardian uses the portal in relation to their child's HIV care was perceived by HCW3 as reflecting parenting style.

Table 4 Themes and selected quotations from health care workers, perspectives on parental access to their patient's patient portal

Topic	Theme	Quotations
Facilitating HIV care with families	Benefits of parents having access	…it's helpful because they will know about upcoming appointments and get reminders about upcoming appointments and be able to…I think you can order refills with MyChart, and see when how many refills you have left; and those sorts of coordination functions, I think, it would be really helpful for our parents to have.—HCW1
	Preference for the portal as a communication tool	I actually prefer getting the messages from families, whether they need to request an appointment or if something is going on, I think it's a much more efficient method of communication with the families than having to track people down on the phone.—HCW3
	Cellphone correspondence with patients	Our nurses have cell phones and use those cell phones to send reminders to patients and communicate with patients…and similarly, the parents tend to have the nurses work cell phones also.—HCW1
	Caution to texting	We're having a lot of texting going on between our young adult patients and the nurse case managers and social work and I do wish […] that that could be in the medical record so everybody knows what's going on because often, I'll ask if something is going on with someone, they said “Oh, we've been texting back and forth,” and I've looked in the chart and there isn't anything there.—HCW3
Signing up adolescent minors	Facilitating communications during patient registration	when parents are sitting at the desk, I'll say, “Can you ask the child, 'Do you have a cell phone?'” And they'll say yes. Or they'll say no. Or sometimes if they're there and the parents are sitting right in that space, the parents say, “No. Go ahead and use my telephone number.” And that's when you say, “Well, I'll go ahead and print the information out because if the parent is not willing to let the child sign up for it that way, this gives the child still access to it.”—HCW4
	Facilitating communications during patient visits	I mention that—“Okay, so do you have access to MyChart?” And almost always this conversation happens with the patient and the parent or guardian right there so we can all be on the same page, and then as I'm either setting-up MyChart or checking out if they have access to MyChart I say “Okay, so who is signing-in to MyChart? Is it you or the guardian?” And depending on what they say I say “Okay, so we want to make sure we have proxy access now that you're in the adolescent years,” and I say “But by policy, once they turn 12 we make sure that they have proxy access because we're starting the work to making sure that they feel like they're becoming more and more skilled in independence in terms of being comfortable talking with their providers, having access to their medical information, and so one of the first steps we do in that is making sure that the patient has their own access and the parent has their own access.” And so then I say “We can give you [proxy access]”—and I right there set them up. I say “Okay, so what's your name?” Honestly, I usually say that spiel and then just transition right into “Let's set it up,” and they usually are—they're just happy to know that they're still gonna be having access.—HCW2
Sharing portal passwords with parents/guardians	Opportunities to discuss proxy accounts with parents/guardians	Now that you mention it, certainly those parents that I'm getting messages from the parent under the kid's name, those are the parents who I should reach out to and get connected to setting up their own proxy. I think that's a really good idea. […] That would be much better than the sharing of the passwords, because then I think you can probably set some parameters on what that proxy can and can't do as opposed to them, having access to everything.—HCW1
	Pressures to share patient portal passwords with parents/guardians	[…]then there's a couple patients who will give their parents their password, and they're like 19, for example, in college, but they have a really close relationship with the parent, and then there's a little bit of “I feel like my mom's gonna think I'm hiding something from her if I don't give her my password,” and so then every now and then I'll see a parent logging in saying “Hey, this is so-and-so's mom,” but they're logged in as the patient, and they say who they are, but they have full access, and so it's interesting, because once they turn 18 in my perspective I don't have to worry as much about what's hidden and what isn't, because the patient is supposed to be the only one who can see it, and at that point, the patient is the one giving access to other people, but there might be some element of coercion there because they're not fully independent at that age, especially if they're going to college and still financially are dependent on their parent.—HCW2
Navigating a novel landscape of patient portal requirements	Modifying clinical documentation	I used to write about sexuality…their sexual history. I don't need to kind of write a paragraph about it and it doesn't really add that much to the whole story of what I need to do that day, and what the point is. And so that's why they just kind of be more parsimonious with what I'm documenting.—HCW1
	Challenges to confidentiality	So, results of labs or documentation. Um, that could kind of limit the child to confidentiality about their own medical care. So, results of STD testing which is related to sexuality that are documented in the chart; that could be a risk if the parent hadn't been told those things by their child, and that may make things uncomfortable for the adolescent if they're apparently learning this thing.—HCW1
	Qualifying applications of information blocking	“Some of the notes can be kept confidential […] the ways the laws are written […] you have to be careful about what you mark and it has to be clearly detrimental to health and wellbeing. […] we've had a lot of discussions in the adolescent staff meetings trying to make sure that what we think is protected is really protected from the adults and there's also a banner that comes up in Epic about whether information is shared via proxy or not shared with the proxy for the account in those patients that have MyChart.—HCW3

There are some adults that understand the need for developing autonomy and to give the kid space and kind of monitor, but not be overbearing. There are others that are totally in their stuff and it's problematic. Then the third type is the one who really doesn't care at all and the kids are basically on their own.

HCW3 expressed the portal as her preferred method for communicating with families ([Table 4]). It was also acknowledged that patients are likely to communicate with HCWs outside of the portal ([Table 4]). HCW1 considers texting with HCWs as a likely faster method of correspondence. However, HCW3 cautioned that cellphone texting may leave some HCW team members in the dark about what communication has occurred ([Table 4]). HCW1 went on to express the importance of allowing patients to utilize their preferred communication methods with HCWs.

Signing Up Adolescent Minors

HCW4 described that once patients are 13 years of age, she solicits the patient's cellphone number during the registration process to directly send the patient a link to sign up for the portal. Outcomes of this process can be determined by whether the parent is present, whether the patient has a phone number or email, and how involved the parent is in their care ([Table 4]).

HWC4 further described that there were adolescent minor patients who want their parents involved and to answer questions during the registration process on their behalf, whereas other patients may be more secretive.

Some children, want their parents involved. But some children are more secretive. And they don't want their parents to know about half the things that they are doing…

Sometimes parents/guardians may register a child's patient portal using their own e-mail and phone number. HCW4 talked about this, adding that this means the patient does not receive communications from their clinicians.

You're not texting the child. You're actually texting the parent […] And the child gets none of it. And the parent will know when the appointment is and the child will only know what the parent is telling them.

Some HCW participants described that during the clinical visit, they have conversations with patients about signing up for the portal ([Table 4]). These quotes highlight that while there are goals to set up adolescent minors with a unique portal account, the process may be complicated by the patient's ability to successfully provide unique contact information and the nature of parental involvement.

Sharing Portal Passwords with Parents/Guardians

Similar to having the patient's portal account registered under a parent's phone or email, sharing passwords with parents can be challenging to preserving patient confidentiality as well as providing HCWs with clarity about whom they are communicating with via portal messages. In the string of correspondence, the parent may not always disclaim that it is the parent; therefore, the HCW may get confused about who they are speaking to. HCW1 described cases where parents send messages using their child's account as opportunities to share information about setting up their proxy account to reduce confusion and allow patients to set parameters on what is available to the parent/guardian through proxy access ([Table 4]).

HCWs described the pressure that some AEA patients experience to share their login credentials with parents/guardians as an element of coercion or differential power dynamic. HCW2 shared the story of an emerging adult patient who felt the need to share their portal password to prevent parental mistrust ([Table 4]).

Navigating a Novel Landscape of Patient Portal Requirements

HCWs referenced receiving information and trainings about changes taking place related to the 21st Century Cures Act Final Rule. HCW1 shared that he now considers patient and parental/guardian access to clinical notes; therefore, he has become more cautious and parsimonious in his documentation ([Table 4]). HCW1 also cautioned that if information, such as STI laboratory test results, is accessible to the parent, it could limit a child's sense of confidentiality about their medical care, particularly if the parents have not been previously informed about this aspect of the patient's sexuality ([Table 4]).

Among HCWs, there appeared to be some issues in recalling and understanding specifics of new patient portal practice requirements. HCW1 could not remember the particulars about what information about patient proxy accounts was shared, also indicating that he receives a lot of information, and some information is filed away to “look up when I need to know it.”

With regard to information blocking, HCW2 stated that if the patient expressed that they do not want anybody to find out they are getting tested and there is concern somebody else will access the patient's account, she will block the visit.

I end up blocking a lot of things just to be safe, […] if the patient is telling me they really don't want anybody to find out they're getting tested…

However, HCW3 alluded to more nuanced requirements for documenting the justification for blocking information ([Table 4]). These comments suggest that information disseminated to HCWs within a health system about proxy accounts may be disconnected from practice.

Discussion

Principal Findings

Our study investigated YHIV's perspectives on parental support and access to patient portals. The majority of YHIV participants were comfortable with their parents/guardians having full access to their portal and report parental/guardian use of the portal as a mechanism for accessing patient health information and for coordinating their HIV care. However, some YHIV reported a lack of technology savviness as a barrier to portal use among their parents/guardians. Interventions focused on building the skills of AEA patients as well as their parents/guardians to navigate the portal may serve YHIV in helping to manage living with HIV.[24] [25] Parental/guardian accessing of YHIV patient portals either via shared passwords or by parents/guardians using their own contact information to register their child's portal was also raised as a multitiered concern.[20] Concerns included compromising the confidentiality of patients and sometimes confusing the health care team about who is authoring messages to HCWs.

Privacy and Indirect Perceived Coercion

Our findings also highlight concerns about patient privacy and parental/guardian coercion to share passwords as relevant to both adolescent and emerging adult patients.[26] HCWs discussed that emerging adults still dependent on parents/guardians financially or for health insurance or emotional support may feel tremendous pressures to share passwords with their parents. Within the spectrum of parent typologies, from the overbearing heavily involved to the uninvolved and indifferent, some parents are weary about youth receiving health services without their knowledge and guidance.[27] Using instances of parental/guardian communication with an HCW using the child's portal account as an opportunity to encourage discussions and education about proxy accounts with patients and their parents/guardians may be a helpful intervention. On a programmatic scale, interventions that flag and intervene on accounts with matching parent and patient email or phone information may also reduce frequency of parents/guardians registered as their children.[28] [29]

Confidentiality: Congruency and Contradiction

Findings demonstrate heterogeneity in YHIV perspectives about parental/guardian access to patient portals; further, these perspectives were sometimes incongruent between participants when considering age and the described role of their parents in supporting HIV care. For example, most participants connect parental access to the portal as facilitators of supporting their HIV care. However, one participant who expressed not having parental support in their HIV management, still valued parental access as being important. He felt that, if something were to ever happen to him, then he would want a parent to have access to all of his medical records. On the other hand, an adolescent participant who is both strongly reliant and prefers for her mother to manage her HIV care expressed being more comfortable with partial access. Having the ability to parse out the availability of medical information to parent/guardian proxies, such as receipt of sexual health services, will help to protect patient confidentiality. HCWs must also be agile in employing new strategies to protect patient confidentiality, such as modifying clinical documentation practices within the portal.[30] Such findings highlight the responsibility of HCWs and electronic health record portal administrators to understand the various patient preferences for sharing access with parents/guardians.

Health Care Transitioning from Adolescents to Young Adults

The role of parent/guardian relationships strongly supportive of HIV medication adherence and well-being was particularly salient among those with PHIV and evolved from early childhood, to adolescence, and into emerging adulthood.[31] [32] Data suggest that approximately 83% of youth with special health care needs, such as YHIV, do not meet the national performance measures for health care transitions from adolescence to adulthood.[33] Consequences of inadequate transition interventions are severe,[34] including medical complications,[35] [36] [37] [38] problems with medication and treatment adherence,[39] discontinuity of care,[40] [41] [42] [43] [44] limitations in health and well-being,[45] [46] and higher care costs.[47] [48] [49] [50] Whether or not YHIV choose to allow parental/guardian access, patient portals will have a critical role in supporting increased ownership of HIV care coordination during transitions to emerging adults.[9] [51] [52] [53] [54]

Limitations

The current study has several limitations, including its qualitative research approach and small sample size that offsets notions of postpositivist generalizability. Qualitative inquiries, such as the current study, are directed toward providing in-depth explanations and meanings rather than generalizing findings.[55] Likewise, the current study does not explore statistical relationships between privacy preferences and specific covariates; rather, descriptive statistics reported as proportions are intended solely to describe univariate characteristics of the study sample. Therefore, future studies that are statistically powered to measure associations of age-adjusted differences in privacy preferences with factors such as, HIV transmission type and viral load, are needed. In addition, although patient portals have been in place for several years, recent 21st Century Cures Act Final Rule requirements and the coronavirus disease 2019 pandemic have served as catalysts for increasing patient utility and championing its implementation at an institutional level. Thus, HCWs appear to be in the relatively early stages of reconciling the new requirements around releasing information and efforts to protect patient confidentiality. This novelty may also explain the low number of participants utilizing proxy accounts.

Conclusion

Together, findings indicate critical opportunities to help AEA patients, their parents/guardians, and HCWs leverage the patient portal in safe and effective ways for supporting medication adherence and viral suppression among YHIV. HCWs should initiate conversations with AEA patients to determine preferences for parental/guardian access and to explain the extent of medical information to be shared, regardless of age and perceived parental involvement in HIV care. In addition, more work is needed to implement patient portals with the capacity to give AEA some parameters in customizing what sensitive information may be available to proxy accounts and to help YHIV transitioning into adolescence to set up unique parent proxy accounts.

Clinical Relevance Statement

YHIV HCWs should initiate conversations with their patients to determine preferences for parental/guardian access and confidentiality and to explain the extent of medical information to be shared, regardless of age and perceived parental involvement in HIV care.

Multiple-Choice Questions

1. In this study, YHIV report using the patient portals for the following tasks related to HIV care, except:

   • Viewing laboratory test results

   • Viewing clinical notes

   • Scheduling appointments

   • Tracking BMI

   Correct Answer: The correct answer is option d. Participants did not report on tracking BMI for HIV care in this study.

2. According to study findings, sharing patient portal passwords directly with parents/guardians may likely:

   • Eliminate all risks of security breach

   • Confuse HCWs about who is authoring messages

   • Limit the amount of medical information available to parents

   • Prevent patients from having to reset passwords

   Correct Answer: The correct answer is option b. It was reported in this study that a HCW can become confused about who is authoring a portal-based message when parents/guardians send messages using their child's patient portal account without identifying themselves.

Conflict of Interest

M.T. receives funding through the National Institute of Health and Research supplies through SpeeDx, LLC through a material transfer agreement (MTA) with Johns Hopkins University. M.T. receives an honorarium as a consultant for Church and Dwight, Inc. (Trojan Sexual Health Advisory Council). A.A. is on advisory boards for Gilead and ViiV and serves as a consultant for Merck. A.A. receives support from Gilead for an investigator-initiated study as well as for her role as the site principal investigator of a multisite study. The authors have no other relevant conflicts of interest to declare.

Acknowledgment

The authors thank the eSHINE II research participants for their invaluable role in supporting this study.

Protection of Human and Animal Subjects

All study activities received human subjects research ethics review and approval from the Institutional Review Board approved at [blinded]. Study data have been deidentified to protect the privacy and confidentiality of participants.

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Publication History

Received: 15 December 2022

Accepted: 15 July 2023

Article published online:
20 September 2023