Adolescent Access to Online Health Services: Perils and Promise

Article Outline

• Abstract
• Methods
  • Interviews
    • Expert interview sampling strategy
    • Interview questions
    • Interviews
  • Literature search
    • Data source
    • Study selection
    • Literature review
    • Data analysis
• Results
  • Potential benefits
    • Health literacy
    • Improved access to and relationship with provider
    • Redefining preventive screening
    • Improving chronic care
  • Potential barriers
    • Medical information complexity and confidentiality concerns
    • Legal issues
    • Perceived developmental barriers in adolescence
    • Health care organization barriers
  • Barriers being addressed
    • Unwanted parental access
    • Internet communication issues
  • Existing systems
• Conclusion
• Acknowledgments
• References
• Copyright

Abstract 

Purpose

Many health care institutions provide online health services to adult patients and proxy access to parents of young children. Many of the benefits and barriers to providing such services to adolescent patients remain unclear.

Methods

The present work is based on a literature review and expert opinion synthesis.

Results

Potential benefits of providing online health services to adolescents include improved health care access, health literacy, and ongoing care. Potential barriers include information complexity, confidentiality concerns, legal issues, and management priorities.

Conclusions

Although barriers exist to implementing adolescent access to online health services, the potential benefits are significant. Overcoming these barriers will involve invoking legal and policy strategies and refocusing priorities on adolescent health.

Keywords: Adolescent health, Health services, Health care access, Information technology, Electronic medical records, Patient–provider communication, Internet

The Institute of Medicine (IOM) identified the use of information technology (IT) as one of four critical forces necessary to improve the quality of health care in the United States [1]. Several health care institutions have implemented Web sites that provide online health services. Online health services generally include two features: patient–provider communication and access to medical records. The IOM argues that electronic patient–provider communication is a core functionality of online health services [2], [3]. Online communication generally takes place via either e-mail or messaging within a secure server environment. Adult patients report great interest in e-mail communication with providers [4], [5]. Some studies have found that electronic communication is preferred by both providers and patients [6], as it leads to decreased telephone and other communication burdens [7], [8], [9] and may be associated with increased provider productivity [8], [10]. Patient access to electronic medical records has also been viewed with interest by adult patients [11], [12], [13], [14], [15]. Although early studies of patient medical record access suggested only modest acceptance by and benefits to patients [16], further studies illustrate patient enthusiasm about viewing and contributing to their medical records [17], [18]. Parents of pediatric patients have also expressed interest in accessing their children's medical records electronically [19]. Although both the online communication and information access services have each been shown to have benefits, the prospect of a fully integrated IT system may be of greatest benefit to patient care [20].

These online health services have become more widely available to adults, and some institutions have allowed proxy access for parents of young children. However, providing these services to adolescent patients is not standard [21]. Studies in adult populations have described the expectations and experiences of adults using online health services, but little is known about benefits and barriers associated with providing these services to adolescents [9], [15], [22], [23], [24]. Through findings from a series of semistructured expert interviews and a literature review, this article summarizes the potential benefits and barriers associated with providing adolescent access to online health services.

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Methods 

Interviews 

To inform our literature search and to identify important policy issues, our goal was to interview national experts who had expertise in clinical IT, particularly regarding adolescent patients. We wanted to include viewpoints from various disciplines, and we began our search by interviewing experts who served on committees promoting adolescent online health services. We continued our interviews using a snowball sampling technique [25]. When each interview was completed, we requested recommendations for additional experts. The interview process was considered complete when all recommendations were investigated and no further novel information was imparted, reaching a stage of thematic saturation.

One investigator (M.M.) conducted all interviews. Eleven local interviews were conducted in person, and seven long-distance interviews were conducted by telephone. After explaining the study's purpose and obtaining verbal consent, interviewees were asked for their thoughts on the benefits and barriers surrounding adolescent access to online health services. Interviews lasted between 30 and 60 minutes. Written notes were used to capture salient points. This study received an instititutional review board exemption from the University of Washington.

A total of 18 interviews with experts were conducted; all requests for interviews were granted. Interviewees included: 11 physicians (three family practitioners, three pediatricians, four adolescent medicine specialists, and one internist), three administrators who direct clinical information systems, three attorneys, and one health policy legislative expert. Ten institutions were represented among our interviewees.

Literature search 

A review of the peer-reviewed scientific literature was conducted in July 2007 with the assistance of a professional librarian. The following search terms were used individually or in combination: patient access to medical records, medical records systems, computerized, adolescent, confidentiality and electronic medical record. The following databases were included in the literature search: PubMed, Biomedical Reference Collection, CINAHL, Academic Search Complete, Expanded Academic Index, and Newspaper Database.

All search results’ abstracts were reviewed by one author (M.M.) to determine whether the article was suitable for inclusion. Abstracts that discussed the following were considered for inclusion: potential benefits and barriers or factors impacting the use of clinical IT among adolescent patients, or clinical use of IT in adult populations if they specifically addressed benefits or factors affecting the use of clinical IT by patients or physicians. Abstracts that were not in English, did not specifically discuss clinical IT, or addressed other aspects of IT use were excluded. Finally, in addition to our literature search, any articles suggested by expert interviewees were also considered for inclusion.

The literature search yielded an initial 432 references related to the topic. These were reviewed and 404 were found not to meet relevant criteria, yielding a total of 28 references [3], [4], [5], [6], [7], [8], [10], [11], [12], [13], [14], [17], [18], [19], [20], [21], [22], [23], [26], [27], [28], [29], [30], [31], [32], [33], [34], [35], [36]. A total of 12 additional references were suggested for inclusion by our expert interviewees, and 11 were included [9], [15], [16], [28], [37], [38], [39], [40], [41], [42], [43]. These additional references were either recently published or had not met our criteria for inclusion upon initial review of the abstract.

One investigator (M.M.) compiled notes, which were then used by all authors in an iterative approach to determine common themes. Six interviewees were contacted a second time to review and further clarify themes. These interviewees were selected based on their ability to describe their experiences or opinions concerning adolescent access to online health services.

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Results 

The following sections summarize the themes that emerged from our interviews and literature review regarding potential benefits and barriers associated with adolescent access to online health services.

Potential benefits 

A literature review revealed health literacy benefits among adult patients who use online health systems, particularly in the areas of obtaining prescription refills, asking nonurgent questions, and obtaining laboratory results [5], [8], [15], [17], [28], [29], [30], [31], [32], [35]. Although studies documenting adolescent health literacy benefits from online health systems are lacking, much is known about adolescent Internet use. Adolescents are avid Internet users; more than 90% of teens have Internet access, and most report daily use [44], [45]. Many adolescents currently access health care information via the Internet [46], [47].

Two common themes emerged from our interview data regarding how adolescents’ facility with the Internet may allow new opportunities to participate in health care. First, health care systems that provide online health information allow teens to access more accurate information than may be obtained via generic Internet search engines, as well as the potential for individualized information. Second, providing opportunities for adolescents to exercise increased responsibility for their own health care online may assist the transition to independently managing their own health care as adults. Giving a teen the responsibility for making appointments using online health systems provides adolescents an active role in their own health care at an earlier age and promotes health literacy. One senior health plan employee noted the irony that, “just at the age at which many teens are becoming very computer literate, around age 13, is the age at which most health care systems revoke online access for both parents and teens.” The most commonly expressed priorities among those whom we interviewed included providing patients and parents online communication access, as well as providing online access to immunizations and medications data.

Online communication is among the most used aspects of online health services, studies in adult patients have shown improved physician access, patient–physician relationship, and continuity of care [7], [15], [27], [33], [34], [35]. Although the literature on adolescent access to online health services has not substantially addressed the impact on the patient–provider relationship, developing rapport with an adolescent patient in any health care environment is considered both a challenge as well as an essential aspect to providing quality care. Several interviewees expressed the belief that allowing adolescents access to online communication with providers would enhance the physician–patient relationship and improve rapport.

Although adolescents generally receive appropriate preventive care regarding immunization status and blood pressure screening, not all teens are screened for sexual activity or substance use despite the availability of clinical screens designed to identify these health risk behaviors [48], [49]. Health risk behaviors are associated with the leading causes of adolescent mortality: namely, unintentional injuries, homicide, and suicide [50], [51], [52], [53], [54], [55] Screening and counseling are recognized to be key components of adolescent health preventive services [56]. Studies have not yet identified the role of preventive screening for adolescents in the online health care environment. Several interviewees, however, hypothesized that an area of great promise in improving adolescent preventive care is the systematic use of an online health risk assessment (HRA), especially if linked to follow-up discussion and guidance. Studies have shown that adolescents prefer computerized over traditional questionnaires; furthermore, the prevalence of reported risk behaviors such as substance use is higher in computerized questionnaires than in face-to-face interviews, suggesting that computerized questionnaires may promote more accurate reporting of stigmatizing behaviors [42], [43], [57], [58], [59]. Providing online HRAs would allow adolescents to access this screening online and to complete it in the time and place of their choice. Health care providers and patients could then use this information during health care visits. Although evidence regarding the effectiveness of HRAs for teens is unclear, a recent evidence review by the Task Force on Community Preventive Services led to a recommendation of their use in adult health screening [60].

Patients with chronic or ongoing illnesses frequently have increased needs from their health care system, as well as a greater imperative to organize and manage their own health care [61], [62]. These patients and their families may need to organize frequent medical appointments and manage multiple medications. Several adult studies have shown the value of promoting patient review of the medical record as part of multifaceted interventions in chronic disease management [37], [38], [39], [40], [41]. Providing patient access to electronic medical records and a more continuous model of care through online communication has the potential to shift our health care system away from the acute visit–based model to a model that better fits the ongoing needs of patients with chronic conditions. Although studies in adolescents with chronic conditions are lacking, our experts noted that online health system access may be even more paramount for adolescents living with chronic conditions, as teens expect access to online information and communication as part of their daily lives.

Potential barriers 

A major concern expressed by our interviewees when considering access to medical records for adolescents or parents of adolescents is the complexity of health information. Providing online medical record access to teens or their parents is not an all-or-none phenomenon, and there is no current consensus regarding which medical record elements should be available to whom. Distinguishing standard from protected or confidential adolescent health information is the crux of the challenge. Confidential adolescent health information includes sexual health or substance use information that may be legally protected from parent access. Standard health information includes information about an ankle sprain, which can be accessed by parents. However, there are areas of overlap between these two categories. Table 1 summarizes findings from discussions with interviewees who provided examples of medical record information and possible areas of concern regarding adolescent confidentiality. Nearly all interviewees agreed that the granularity of adolescent medical record information contributes unique challenges to the creation of comprehensive online health services.

Table 1. Information that may be available on adolescent electronic medical records and examples in which confidentiality may be compromised

Adolescent privacy laws also vary by state. Health care organizations that provide coverage to multiple states using a single electronic medical record will need to find creative ways to address this challenge. At present there is no widely available technology that can distinguish between confidential and standard medical record information. Even if electronic medical records allowed this distinction, providers may be required to consistently label chart information in a manner that flagged confidential information to ensure its protection. Given that an adolescent's preventive care visit may involve myriad confidential and standard information, providers may not be able or willing to consistently make this distinction during documentation. Furthermore, when outside records are obtained from health care organizations frequented by adolescents such as Planned Parenthood, records would need to be reliably assessed to protect confidential information. One option in addressing this complexity is to allow adolescent patients to review their online medical information and to choose to sequester any information that can be legally protected as confidential; this could be done in clinic or even from a home computer.

Legal issues that affect adolescent health care are well-recognized barriers to allowing adolescents online access to health services; two major considerations expressed in the literature and by interviewees are adolescents’ ability to consent to care and adolescents’ access to medical records. Adolescents who are legally minors may consent to their own health care only in certain circumstances [63], [64]. When a minor can consent to care, then under the HIPAA Privacy Rule the adolescent minor can access medical records regarding that care [65]. HIPAA Privacy Rule defers to state or other applicable law for whether a parent can access records when a minor has consented to care or when there is an agreement of confidentiality. These other laws may forbid access, require access, or allow providers discretion in the matter.

Whether an adolescent has access to nonconfidential medical records, such as for a sprained ankle, is often unclear, as the adolescent is not the individual consenting to care. Although the HIPAA Privacy Rule states that an adolescent's adult guardian may generally access medical information about health services when the minor has not given consent or there is no agreement of confidentiality, the Rule does not explicitly forbid teens from also having access to their own health care records [66]. A few states have adopted health privacy laws that explicitly specify circumstances under which minors have authority over their own medical records [63].

These legal issues complicate the issue of adolescent access to their own standard health care records, as well as parental access to the teens’ confidential health care records. In some cases, adolescents may access confidential medical records and parents may not, whereas parents may access standard medical records and adolescents may not. Overcoming these barriers will involve careful review of all relevant laws and development of strategies that are consistent with the laws.

Some experts believe that adolescent developmental and behavioral issues may preclude their access to online health services. Several interviewees expressed concern that teens may not be developmentally able to understand the information in their medical records. Some interviewees expressed concern that teens may be unable to comprehend that any online communication with providers would become a permanent part of the medical record, although verbal disclosures made during clinic visits may also become part of a patient's permanent medical record.

Adolescents, as a group, do not typically advocate on behalf of their own health care needs, and generally are not the primary subscribers on health insurance plans. As a result, teen needs may not be among a health care organization's highest priorities. Given that providing online health care services to adolescents may involve financial, legal, and other risks to a health care organization, and given that teens may not actively request this innovation, health care organizations may not be inclined to prioritize these services to the adolescent population. A few notable exceptions exist in that some health care systems have established adolescent interest groups involving providers or patients seeking to improve adolescent health care. One example, the Palo Alto Medical Foundation Adolescent Interest Group, brings together health care providers from various disciplines to work toward improving adolescent health care. Another example, the Kaiser Permanente system in Colorado, sponsors a teen advisory council.

Barriers being addressed 

Some respondents expressed concern that if adolescents had sole access to online health care systems, then parents might pressure them to disclose personal passwords. Other interviewees were dismissive of this concern, stating that parents do not routinely demand password access to teens’ e-mail accounts, so it is unlikely that parents would demand online access to their health information. To address concerns that a determined parent might coerce an adolescent into revealing a password, one health care system implemented a system in which any report of a parent demanding inappropriate access to online information would result in revocation of online access for both parent and teen. Another health care system's solution is to allow the teen the ability to reset the individual access password at any time. Therefore, if a parent obtains access to the record using the teen's password, the teen can then reset the password.

Some interviewees raised concerns regarding the ability of adolescents to appropriately use online patient–provider communication. The asynchronous nature of Internet communication is not appropriate for highly urgent patient concerns, such as suicidal ideation. Adolescent access to patient–provider electronic messaging also raises challenges for ensuring appropriate confidential care. A physician may be able to provide e-mail advice regarding contraception as confidential care; the physician may not be able to provide e-mail advice on standard care such as acne medications without parental consent or a previously signed consent form. Despite these apprehensions, most providers that we interviewed currently used e-mail communication with patients and/or parents. For providers considering using e-mail to communicate with patients, guidelines for online provider communication with patients are available from the American Medical Informatics Association [67]. Patient–provider e-mail communication requires appropriate guidance and documentation as in any other patient–provider communication method.

Existing systems 

Several health care systems have moved forward with allowing adolescent access to online health services. Table 2, which was developed from discussions with key informants, details the progress made by several institutions. Each informant has addressed various adolescent-specific online access issues. These bold efforts will allow us to learn more about how teens and parents use online health care systems and outcomes associated with their use.

Table 2. Six health care systems' approaches to online health system access for adolescent patients and their parents

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Conclusion 

Now that online access to children's medical records by parents has become standard in several major health care systems, a spotlight has been placed on the gaps in availability of online health services for adolescents. Health care systems are beginning to hear parental concerns and complaints regarding the inability to access their teens’ medical records online. Furthermore, a new realm of missed opportunities for improving health care has become more clear.

Based on our results of reviewing the literature and interviewing experts, we recommend prioritizing adolescent access both to online patient–provider communication as well as to medical records. Providing adolescents a secure venue for electronic communication with providers would increase teens’ access to care in a medium in which most have significant expertise. Concomitant with providing this access comes the opportunity and responsibility to educate adolescents about appropriate online medical communication. We believe that the perceived developmental concerns surrounding online communication becoming part of an adolescent's medical record are no greater than the risks of teen disclosures in any other medical encounter such as a clinic visit or provider phone call.

Providing adolescent access to electronic medical records promotes ownership and responsibility of this information, and may facilitate critical health literacy skills for navigating today's health care systems. Transferring the responsibility for managing medication refills or appointment scheduling may seem a lofty goal, but today's technology-savvy teens may already possess the skills to navigate these systems.

Placing the priority of online access on adolescents may cause some parents to feel alarm at being left out of their teens’ health information. Providing parental education regarding the benefits of shifting health information responsibility from parent to adolescent, and promoting health literacy among teens, are likely to alleviate these concerns. This is consistent with the practice of conducting in-office visits alone with an adolescent patient. Health care providers who offer education and who promote open communication between parents and teens may also alleviate parental worries. Reassuring parents that they will retain medical record access when needed for all appropriate information may also be of benefit.

Opening adolescent access to online health services will also require involvement of health systems at many levels. The establishment of interdisciplinary adolescent interest workgroups that include physicians, nurses, medical assistants, clinic schedulers, information technology staff, legal and policy experts, as well as parents and patients is highly recommended. Collaboration with national colleagues regarding their experiences and recommendations is also invaluable.

This paper has limitations. Our use of a snowball interview sampling strategy may have limited our range of interviewees. However, we interviewed experts from various backgrounds and found a significant degree of overlap in their suggestions. The literature on online health services for adolescents was also limited. This highlights the importance of developing research programs to better understand adolescents’ and their parents’ views regarding online health services.

Despite these limitations, our findings have important implications. The potential benefits to allowing adolescent online health service access present opportunities to improve clinical care for a patient population that is often difficult to reach. The barriers associated with providing these services to adolescents are not trivial, but several integrated health care systems have successfully overcome these barriers and now provide online health services to adolescent patients. Broader access to online health services by adolescents will be possible only when health care providers and policy makers recognize the importance of the unmet needs and preferences of adolescents for health care. The question may not be, “Should we allow patient access to online health systems?”; rather it may be, “How and when will we allow patient access to online health systems?”

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Acknowledgments 

The authors express gratitude to all interviewees who participated in this project. The authors especially thank Ted Eytan, M.D., M.P.H., Jeff Lindenbaum, M.D., and Abigail English, J.D., for their assistance with this manuscript.

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