Background. Although today’s youth are interested in using the internet to access and manage information related to their health, little information exists about parental attitudes towards the release of health information to adolescents.
Methods. Structured interviews were conducted with the parents of 83 adolescents detained at a large Northern California juvenile detention facility to examine parental perceptions toward allowing their children online access to their own health information.
Results. The majority of parents interviewed (70%) wanted their children to have online access to their own health information. Seventy-nine percent of these parents were also comfortable allowing their children to choose with whom they would share this information.
Conclusions. This study is one of the first to examine parental attitudes towards providing adolescents access to their own health information, and the first among parents of underserved youth. This study demonstrates that parents may be quite supportive of allowing their adolescent children to have secure online access to their own health information.
Keywords: HIT, PHR, adolescent medicine, internet, juvenile justice.
Citation: Gaskin GL, Bruce J, Anoshiravani A. Understanding parent perspectives concerning adolescents’ online access to personal health information. J Participat Med. 2016 March 14; 8:e3.
Published: March 14, 2016.
Funding Source: This project was supported by funding from the Stanford Medical Scholars Program (Stanford, CA) and the California Wellness Foundation (Woodland Hills, CA).
Competing Interests: The authors have declared that no competing interests exist.
The published literature has identified numerous benefits and health impacts (potential and realized) of patient portals and/or personal health records for pediatric populations.  Allowing patients access to their own personal health information (PHI) has been documented to increase patient engagement and empowerment, improve health literacy, improve patient safety, and provide more timely patient-care team communication.  Although slowly changing, most existing pediatric patient portals focus on enabling parental access to their child’s health information. 
However, because the focus is often on young children and their caregivers, adolescents, the population currently most comfortable and engaged with technology, are seldom considered. Today’s adolescents have demonstrated a high level of interest in using the internet to access and manage information related to their health;  however, little work has been done to directly assess the opinions of these youths and their families. Some studies have raised questions about giving adolescents access to their own PHI, mostly focusing on the complicated legal issues, perceived risks, or technical details of implementation. 
Few data exist about the use of patient portals and online personal health records by adolescent patients and their families. Despite recommendations from both the American Academy of Pediatrics and the Society for Adolescent Health and Medicine for inclusion of online access to PHI for adolescents as a part of high-quality adolescent health care,   very few studies have examined the preferences of adolescents themselves   and only one deals with the concerns of the parents of adolescents with regard to PHI accessible through the internet.  Especially little work has been done to explore the role that health information technology (HIT) can play to improve the provision of health care for underserved youth. Underserved populations, such as detained youth, have greater unmet health needs and more fragmented healthcare than the general adolescent population.  The existing gap in HIT knowledge and innovation only serves to intensify the existing health disparities and fragmented care faced by these young people.
This paper aims to assess parents’ attitudes toward, perspectives on, and concerns about allowing adolescents access to their own personal health information online. In particular, this work focuses on the parents of a particularly underserved and high-risk population of youth. We hypothesize that if utility and parental acceptance can be found in this population, it will lay the foundation to challenge the commonly-held assumption that parents are uncomfortable with their adolescent children having access to their own health information.
Patients and Methods
We conducted structured telephone interviews with the parents/guardians of 13-18 year-old adolescents detained at a large Northern California juvenile detention facility. The interviews were designed to examine parental perceptions about allowing their children online access to their own PHI.
The interviews lasted approximately 10 minutes, were conducted in English and consisted of both quantitative and qualitative questions. In total, we attempted to contact the parents/guardians of 305 randomly selected youths. Of the159 with whom we spoke, 83 spoke English and agreed to participate in the interview.
Fisher’s Exact Test was used to examine differences in rates of parental acceptance of youth’s online access to PHI by race, gender, age and the relationship of the respondent to the youth. Qualitative data were examined using both summative content analysis and theme analysis to describe parental concerns about allowing online access to their child’s health information. Study authors GG and JB collaborated to inductively co-code the data and develop a codebook through a consensus-building process until negotiated intercoder agreement was achieved.  Identified themes were presented to AA for feedback based on his expertise in the field of adolescent health. Using an iterative process, the three authors met multiple times to refine the themes and identify representative quotes.  All methods in this study were approved by the Stanford University and Santa Clara Valley Medical Center Institutional Review Boards.
The children of parents surveyed were predominately male (88%) and Hispanic (70%) with a median age of 16 years (Table 1). These demographics are representative of the population of adolescents detained at the study facility and were nearly identical to previously published studies in this specific setting.  The majority of parents/guardians interviewed (70%) wanted their child to have secure, online access to their own PHI. There were no statistically significant differences between the proportion of parents who wanted to give their child access based on the gender, age or race/ethnicity of the child or the relationship of the child to the respondent. Parents/guardians who reported ever having an incident in which they were missing necessary health information for themselves or their children were unanimously in favor of giving their child online access to their health information versus 65% of parents who had never experienced such missing information(p=0.004).
Among the 70% of parents/guardians who were in favor of allowing their child to have access to their health information, 100% believed that the adolescents should have the ability to share this information with their parent/guardians through the online system. A large majority (79%) of these parents/guardians was also comfortable leaving the choice with their children, allowing them to choose with whom they would share their health information.
Sixty-three percent of respondents expressed no concerns about allowing their child online access to their PHI. A qualitative content analysis of the comments from the 31 parents/guardians who did express concerns revealed three major areas of concern that included: 1) security concerns related to a malicious third-party hacking their child’s online account to gain illegal access to their PHI, 2) issues regarding authorized access to the their child’s health information, and 3) perceived barriers to utilization (Table 2).
Table 2. Themes and representative quotations surrounding parental concerns about allowing adolescents access to their own personal health information from the 37% of parents/guardians who expressed having any concerns about such access.
This study is one of the first to examine parental attitudes towards providing adolescents access to their own PHI and the first to examine such attitudes among an underserved youth population. Whereas other work in this field has focused on the legal and technical challenges inherent in allowing teenagers to have access to their own PHI,  this study elicited parents’ actual thoughts and concerns. We demonstrate that even among a youth population that tends to have very conflicted relationships with their parents,  there is a high level of parental interest in allowing their adolescent children access to and control of their own health information online. In contrast to published policy statements  and the small amount of existing research,  the majority of parents in our sample were comfortable with allowing their children to see their health information, and had no concerns about their children choosing which, if any information they would share with them. The concerns parents did express tended to center around the privacy of health information. These concerns could likely be addressed through education about the privacy and security features of the specific patient portal or personal health record being used.
We acknowledge several limitations regarding this work. The study was conducted among the parents of a very specific, high-risk adolescent patient population. Differences in our findings from previous work may represent either shifting parental perspectives over time or differing views among different populations. Additionally, since this is a small pilot project with interviews conducted only in English, the results may not be generalizable to a broader population of youth and their families. Larger samples in more diverse healthcare settings will be necessary to further our understanding of parents’ attitudes toward allowing their adolescent children online access to their own personal health information.
As health care organizations begin to implement patient portals for adolescent patients, it is vital to understand the perspectives and concerns of both adolescents and their parents toward such systems. This study is the first to demonstrate that parents may be quite supportive of allowing their adolescent children to have online access to and full control of their own PHI. Parents’ primary concerns might be alleviated by using a portal with robust privacy and security features and assuring adequate information for users and parents about these features. In conjunction with previous work demonstrating adolescents’ interest in accessing their own PHI,  this study suggests that continued efforts to implement online-accessible records for adolescents is feasible and useful.
The authors would like to acknowledge Nicole Capdarest-Arest for her help in conducting the background research for this project. We also thank Kathy Serena and Khai Nguyen for their help in facilitating the interviews.
- Bourgeois FC, Mandl KD, Shaw D, Flemming D, Nigrin DJ. Mychildren’s: Integration of a personally controlled health record with a tethered patient portal for a pediatric and adolescent population. AMIA Annual Symposium Proceedings; 2009: American Medical Informatics Association. p. 65. ↩
- Park K, Park MD, Longhurst CA. Patient and Family Access to Electronic Health Records: A Key Ingredient for a Pediatric Learning Health System. J Particip Med 2015;7. Available at: https://participatorymedicine.org/journal/opinion/commentary/2015/01/21/patient-and-family-access-to-electronic-health-records-a-key-ingredient-for-a-pediatric-learning-health-system/. Accessed March 11, 2016. ↩
- Weitzman ER, Kaci L, Quinn M, Mandl KD. Helping high-risk youth move through high-risk periods: personally controlled health records for improving social and health care transitions. J Diabetes Sci Technol 2011;5:47-54. ↩
- Walker J, Darer JD, Elmore JG, Delbanco T. The road toward fully transparent medical records. N Engl J Med 2014;370:6-8. ↩
- Fiks AG, Mayne SL, Karavite DJ, et al. Parent-Reported Outcomes of a Shared Decision-Making Portal in Asthma: A Practice-Based RCT. Pediatrics 2015;135:e965-e73. ↩
- Woods SS, Schwartz E, Tuepker A, et al. Patient experiences with full electronic access to health records and clinical notes through the My HealtheVet Personal Health Record Pilot: qualitative study. J Med Internet Res 2013;15. ↩
- Wright A, Poon EG, Wald J, et al. Randomized controlled trial of health maintenance reminders provided directly to patients through an electronic PHR. J Gen Intern Med 2012;27:85-92. ↩
- Britto MT, Hesse EA, Kamdar OJ, Munafo JK. Parents’ perceptions of a patient portal for managing their child’s chronic illness. The Journal of pediatrics 2013;163:280-1. e2. ↩
- Zhao S. Parental education and children’s online health information seeking: Beyond the digital divide debate. Soc Sci Med 2009;69:1501-5. ↩
- Coker TR, Sareen HG, Chung PJ, Kennedy DP, Weidmer BA, Schuster MA. Improving access to and utilization of adolescent preventive health care: The perspectives of adolescents and parents. J Adolesc Health 2010;47:133-42. ↩
- Gaskin GL, Longhurst CA, Anoshiravani A. Internet access and attitudes toward online personal health information among detained youth. Pediatrics 2012;130:914-7. ↩
- Blythe MJ, Adelman WP, Breuner CC, et al. Standards for health information technology to ensure adolescent privacy. Pediatrics 2012;130:987-90. ↩
- Cushman R, Froomkin AM, Cava A, Abril P, Goodman KW. Ethical, legal and social issues for personal health records and applications. Journal of biomedical informatics 2010;43:S51-S5. ↩
- Bayer R, Santelli J, Klitzman R. New Challenges for Electronic Health Records: Confidentiality and Access to Sensitive Health Information About Parents and Adolescents. JAMA 2015;313:29-30. ↩
- Anoshiravani A, Gaskin GL, Groshek MR, Kuelbs C, Longhurst CA. Special requirements for electronic medical records in adolescent medicine. J Adolesc Health 2012;51:409-14. ↩
- Gray SH, Pasternak RH, Gooding HC, et al. Recommendations for electronic health record use for delivery of adolescent health care. J Adolesc Health 2014;54:487-90. ↩
- Bergman DA, Brown NL, Wilson S. Teen use of a patient portal: a qualitative study of parent and teen attitudes. Perspect Health Inf Manag 2008;5:13. ↩
- Golzari M, Hunt SJ, Anoshiravani A. The health status of youth in juvenile detention facilities. J Adolesc Health 2006;38:776-82. ↩
- Feinstein RA, Lampkin A, Lorish CD, Klerman LV, Maisiak R, Oh MK. Medical status of adolescents at time of admission to a juvenile detention center. J Adolesc Health 1998;22:190-6. ↩
- Munro BH. Statistical methods for health care research: Lippincott Williams & Wilkins; 2005. ↩
- Vaismoradi M, Turunen H, Bondas T. Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nurs Health Sci 2013;15:398-405. ↩
- Campbell JL, Quincy C, Osserman J, Pedersen OK. Coding in-depth semistructured interviews problems of unitization and intercoder reliability and agreement. Sociological Methods & Research 2013:0049124113500475. ↩
- MacQueen KM, McLellan E, Kay K, Milstein B. Codebook development for team-based qualitative analysis. Cultural anthropology methods 1998;10:31-6. ↩
- Fereday J, Muir-Cochrane E. Demonstrating rigor using thematic analysis: A hybrid approach of inductive and deductive coding and theme development. International journal of qualitative methods 2008;5:80-92. ↩
- Ryan GW, Bernard HR. Techniques to identify themes. Field methods 2003;15:85-109. ↩
- Gaskin GL, Glanz JM, Binswanger IA, Anoshiravani A. Immunization Coverage Among Juvenile Justice Detainees. Journal of Correctional Health Care 2015. ↩
- Emily E Johnston BRA, Caroline Graham, Janine S. Bruce, Lisa J. Chamberlain, Arash Anoshiravani. In Their Own Voices: The Reproductive Health Care Experiences of Detained Adolescent Girls. Womens Health Issues. 2015 Nov 19. pii: S1049-3867(15)00143-7. ↩
- Hoeve M, Dubas JS, Eichelsheim VI, Van der Laan PH, Smeenk W, Gerris JR. The relationship between parenting and delinquency: A meta-analysis. J Abnorm Child Psychol 2009;37:749-75. ↩
Copyright: © 2016 Gregory L. Gaskin, Janine Bruce, and Arash Anoshiravani. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the authors, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.