Attitudes, experiences, and safety behaviours of adolescents and young adults who read visit notes: Opportunities to engage patients early in their care

Lam, Barbara D.; Bourgeois, Fabienne; DesRoches, Catherine M.; Dong, Zhiyong; Bell, Sigall K.

doi:10.7861/fhj.2021-0118

Cited by 13 publications

(7 citation statements)

References 22 publications

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“…In the United States, policies regarding age and privacy exceptions are dependent on state laws, which vary throughout the country. In 2021, the 21st Century Cures Act made it mandatory for health care providers to provide every patient with free electronic access to their clinical notes [ 6 ]. There is a possibility for withholding confidential information; however, questions still remain [ 7 ].…”

Section: Introductionmentioning

confidence: 99%

Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review

Hagström¹,

Blease²,

Haage³

et al. 2022

J Med Internet Res

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Background Ongoing efforts worldwide to provide patients with patient-accessible electronic health records (PAEHRs) have led to variability in adolescent and parental access across providers, regions, and countries. There is no compilation of evidence to guide policy decisions in matters such as access age and the extent of parent proxy access. In this paper, we outline our scoping review of different stakeholders’ (including but not limited to end users) views, use, and experiences pertaining to web-based access to electronic health records (EHRs) by children, adolescents, and parents. Objective The aim of this study was to identify, categorize, and summarize knowledge about different stakeholders’ (eg, children and adolescents, parents, health care professionals [HCPs], policy makers, and designers of patient portals or PAEHRs) views, use, and experiences of EHR access for children, adolescents, and parents. Methods A scoping review was conducted according to the Arksey and O’Malley framework. A literature search identified eligible papers that focused on EHR access for children, adolescents, and parents that were published between 2007 and 2021. A number of databases were used to search for literature (PubMed, CINAHL, and PsycINFO). Results The approach resulted in 4817 identified articles and 74 (1.54%) included articles. The papers were predominantly viewpoints based in the United States, and the number of studies on parents was larger than that on adolescents and HCPs combined. First, adolescents and parents without access anticipated low literacy and confidentiality issues; however, adolescents and parents who had accessed their records did not report such concerns. Second, the main issue for HCPs was maintaining adolescent confidentiality. This remained an issue after using PAEHRs for parents, HCPs, and other stakeholders but was not an experienced issue for adolescents. Third, the viewpoints of other stakeholders provided a number of suggestions to mitigate issues. Finally, education is needed for adolescents, parents, and HCPs. Conclusions There is limited research on pediatric PAEHRs, particularly outside the United States, and on adolescents’ experiences with web-based access to their records. These findings could inform the design and implementation of future regulations regarding access to PAEHRs. Further examination is warranted on the experiences of adolescents, parents, and HCPs to improve usability and utility, inform universal principles reducing the current arbitrariness in the child’s age for own and parental access to EHRs among providers worldwide, and ensure that portals are equipped to safely and appropriately manage a wide variety of patient circumstances. International Registered Report Identifier (IRRID) RR2-10.2196/36158

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Section: Introductionmentioning

confidence: 99%

Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review

Hagström¹,

Blease²,

Haage³

et al. 2022

J Med Internet Res

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show abstract

“…Parents considered it more important to correct errors than adolescents and valued the web-based option to ask questions and manage appointments more highly than adolescents. Comparably, recent studies among adolescent patients show that adolescents are less likely to speak up about mistakes in their records than their parents [ 73 , 74 ], and are more reluctant to send direct messages in the PAEHR to their caregivers than adults [ 13 , 23 ]. Both parents and adolescents liked to share record content with their close ones, but adolescents also valued the opportunity to shield specific content from their parents when needed.…”

Section: Discussionmentioning

confidence: 99%

The Effect of Using a Client-Accessible Health Record on Perceived Quality of Care: Interview Study Among Parents and Adolescents

Benjamins,

de Vet,

de Mortier

et al. 2024

J Particip Med

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Background Patient-accessible electronic health records (PAEHRs) are assumed to enhance the quality of care, expressed in terms of safety, effectiveness, timeliness, person centeredness, efficiency, and equity. However, research on the impact of PAEHRs on the perceived quality of care among parents, children, and adolescents is largely lacking. In the Netherlands, a PAEHR (Iuvenelis) was developed for preventive child health care and youth care. Parents and adolescents had access to its full content, could manage appointments, ask questions, and comment on written reports. Objective This study aims to assess whether and how using this PAEHR contributes to perceived quality of care from a client’s perspective. Methods We chose a qualitative design with a phenomenological approach to explore how parents and adolescents perceived the impact of using a PAEHR on quality of care. In-depth interviews that simultaneously included 1 to 3 people were conducted in 2021. In total, 20 participants were included in the study, representing parents and adolescents, both sexes, different educational levels, different native countries, and all participating municipalities. Within this group, 7 of 13 (54%) parents had not previously been informed about the existence of a client portal. Their expectations of using the client portal, in relation to quality of care, were discussed after a demonstration of the portal. Results Parents and adolescents perceived that using Iuvenelis contributed to the quality of care because they felt better informed and more involved in the care process than before the introduction of Iuvenelis. Moreover, they experienced more control over their health data, faster and simpler access to their health information, and found it easier to manage appointments or ask questions at their convenience. Parents from a migratory background, among whom 6 of 7 (86%) had not previously been informed about the portal, expected that portal access would enhance their understanding of and control over their care processes. The parents expressed concerns about equity because parents from a migratory background might have less access to the service. Nevertheless, portal usability was regarded as high. Furthermore, both parents and adolescents saw room for improvement in the broader interdisciplinary use of Iuvenelis and the quality of reporting. Conclusions Using Iuvenelis can contribute to the client-experienced quality of care, more specifically to perceived person centeredness, timeliness, safety, efficiency, and integration of care. However, some quality aspects, such as equity, still need addressing. In general, client information about the portal needs to be improved, specifically focusing on people in vulnerable circumstances, such as those from migratory backgrounds. In addition, to maximize the potential benefit of using Iuvenelis, stimulating a person-centered attitude among professionals is important. Considering the small number of adolescent participants (n=7), adding quantitative data from a structured survey could strengthen the available evidence.

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“…[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.…”

Section: Adolescents and Emerging Adultsmentioning

confidence: 99%

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

Jackman,

Ohene-Kyei,

Barfield

et al. 2023

Appl Clin Inform

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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.

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Attitudes, experiences, and safety behaviours of adolescents and young adults who read visit notes: Opportunities to engage patients early in their care

Cited by 13 publications

References 22 publications

Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review

Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review

The Effect of Using a Client-Accessible Health Record on Perceived Quality of Care: Interview Study Among Parents and Adolescents

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

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