Use of and Experiences With Online Access to Electronic Health Records for Parents, Children, and Adolescents: Protocol for a Scoping Review

Overview

Journal JMIR Res Protoc

Publisher JMIR Publications

Specialty General Medicine

Date 2022 Jun 15

PMID 35704386

Authors

Josefin Hagstrom

Charlotte Blease

Barbara Haage

Isabella Scandurra

Scharlett Hansson

Maria Hagglund

Affiliations

Soon will be listed here.

Abstract

Background: As patient online access to electronic health records becomes the standard, implementation of access for adolescents and parents varies across providers, regions, and countries. There is currently no international compilation of evidence to guide policy decisions in matters such as age limit for access and the extent of parent proxy access.

Objective: This paper presents the protocol for a scoping review of different stakeholders' (including but not limited to end users) perspectives on use, opinions, and experiences pertaining to online access to electronic health records by parents, children, and adolescents.

Methods: This scoping review will be conducted according to the Arksey and O'Malley framework. Several databases will be used to conduct a literature search (PubMed, CINAHL, and PsycInfo), in addition to literature found outside of these databases. All authors will participate in screening identified papers, following the research question: How do different stakeholders experience parents', children's, and adolescents' online access to the electronic health records of children and adolescents? Data abstraction will include but will not be limited to publication type, publication year, country, sample characteristics, setting, study aim, research question, and conclusions. The data to be analyzed are from publicly available secondary sources, so this study does not require an ethics review.

Results: The results from this scoping review will be presented in a narrative form, and additional data on study characteristics will be presented in diagrams or tabular format. This scoping review protocol was first initiated by Uppsala University in June 2021 as part of the NordForsk-funded research project NORDeHEALTH. The results are expected to be presented in a scoping review in June 2022. The results will be disseminated through stakeholder meetings, scientific conference presentations, oral presentations to the public, and publication in a peer-reviewed journal.

Conclusions: This is, to our knowledge, the first study to map the literature on the use and experiences of parents' and adolescents' online access to the electronic health records of children and adolescents. The findings will describe what benefits and risks have been experienced by different stakeholders so far in different countries. A mapping of studies could inform the design and implementation of future regulations around access to patient-accessible electronic health records.

International Registered Report Identifier (irrid): DERR1-10.2196/36158.

Citing Articles

Patients' Experiences of a National Patient Portal and Its Usability: Cross-Sectional Survey Study.

Simola S, Horhammer I, Xu Y, Barkas A, Fagerlund A, Hagstrom J J Med Internet Res. 2023; 25:e45974.

PMID: 37389909 PMC: 10365631. DOI: 10.2196/45974.

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

Hagstrom J, Blease C, Haage B, Scandurra I, Hansson S, Hagglund M J Med Internet Res. 2022; 24(11):e40328.

PMID: 36413382 PMC: 9727693. DOI: 10.2196/40328.

References

Klein J, McNulty M, Flatau C . Adolescents' access to care: teenagers' self-reported use of services and perceived access to confidential care. Arch Pediatr Adolesc Med. 1998; 152(7):676-82. DOI: 10.1001/archpedi.152.7.676. View

Crameri K, Maher L, Van Dam P, Prior S . Personal electronic healthcare records: What influences consumers to engage with their clinical data online? A literature review. Health Inf Manag. 2020; 51(1):3-12. DOI: 10.1177/1833358319895369. View

Colquhoun H, Levac D, OBrien K, Straus S, Tricco A, Perrier L . Scoping reviews: time for clarity in definition, methods, and reporting. J Clin Epidemiol. 2014; 67(12):1291-4. DOI: 10.1016/j.jclinepi.2014.03.013. View

Scandurra I, Pettersson M, Eklund B, Lyttkens L . Analysis of the Updated Swedish Regulatory Framework of the Patient Accessible Electronic Health Record in Relation to Usage Experience. Stud Health Technol Inform. 2018; 245:798-802. View

Esch T, Mejilla R, Anselmo M, Podtschaske B, Delbanco T, Walker J . Engaging patients through open notes: an evaluation using mixed methods. BMJ Open. 2016; 6(1):e010034. PMC: 4735137. DOI: 10.1136/bmjopen-2015-010034. View

Levac D, Colquhoun H, OBrien K . Scoping studies: advancing the methodology. Implement Sci. 2010; 5:69. PMC: 2954944. DOI: 10.1186/1748-5908-5-69. View

Neves A, Freise L, Laranjo L, Carter A, Darzi A, Mayer E . Impact of providing patients access to electronic health records on quality and safety of care: a systematic review and meta-analysis. BMJ Qual Saf. 2020; 29(12):1019-1032. PMC: 7785164. DOI: 10.1136/bmjqs-2019-010581. View

Ouzzani M, Hammady H, Fedorowicz Z, Elmagarmid A . Rayyan-a web and mobile app for systematic reviews. Syst Rev. 2016; 5(1):210. PMC: 5139140. DOI: 10.1186/s13643-016-0384-4. View

de Lusignan S, Mold F, Sheikh A, Majeed A, Wyatt J, Quinn T . Patients' online access to their electronic health records and linked online services: a systematic interpretative review. BMJ Open. 2014; 4(9):e006021. PMC: 4158217. DOI: 10.1136/bmjopen-2014-006021. View

10.

Huang J, Yueh R, Ma S, Cruz R, Bauman L, Choi L . Adolescents' and Young Adults' Satisfaction with and Understanding of Medical Notes from a Pediatric Gastroenterology Practice: A Cross-Sectional Cohort Study. J Pediatr. 2019; 215:264-266. DOI: 10.1016/j.jpeds.2019.06.052. View

11.

Ransom N . A teen's perspective: adolescent access to their own electronic medical records. Int J Adolesc Med Health. 2015; 28(1):123-4. DOI: 10.1515/ijamh-2015-0081. View

12.

Evans R . Electronic Health Records: Then, Now, and in the Future. Yearb Med Inform. 2016; Suppl 1:S48-61. PMC: 5171496. DOI: 10.15265/IYS-2016-s006. View

13.

Britto M, Hesse E, Kamdar O, Munafo J . Parents' perceptions of a patient portal for managing their child's chronic illness. J Pediatr. 2013; 163(1):280-1.e1-2. DOI: 10.1016/j.jpeds.2013.02.041. View

14.

Delbanco T, Walker J, Bell S, Darer J, Elmore J, Farag N . Inviting patients to read their doctors' notes: a quasi-experimental study and a look ahead. Ann Intern Med. 2012; 157(7):461-70. PMC: 3908866. DOI: 10.7326/0003-4819-157-7-201210020-00002. View

15.

Campos-Castillo C, Anthony D . The double-edged sword of electronic health records: implications for patient disclosure. J Am Med Inform Assoc. 2014; 22(e1):e130-40. PMC: 11888334. DOI: 10.1136/amiajnl-2014-002804. View

16.

Walker J, Leveille S, Bell S, Chimowitz H, Dong Z, Elmore J . OpenNotes After 7 Years: Patient Experiences With Ongoing Access to Their Clinicians' Outpatient Visit Notes. J Med Internet Res. 2019; 21(5):e13876. PMC: 6526690. DOI: 10.2196/13876. View

17.

Carlson J, Goldstein R, Buhr T, Buhr N . Teenager, Parent, and Clinician Perspectives on the Electronic Health Record. Pediatrics. 2020; 145(3). DOI: 10.1542/peds.2019-0193. View

18.

Salmi L, Brudnicki S, Isono M, Riggare S, Rodriquez C, Schaper L . Six countries, six individuals: resourceful patients navigating medical records in Australia, Canada, Chile, Japan, Sweden and the USA. BMJ Open. 2020; 10(9):e037016. PMC: 7493106. DOI: 10.1136/bmjopen-2020-037016. View

19.

Schwarz J, Barkas A, Blease C, Collins L, Hagglund M, Markham S . Sharing Clinical Notes and Electronic Health Records With People Affected by Mental Health Conditions: Scoping Review. JMIR Ment Health. 2021; 8(12):e34170. PMC: 8715358. DOI: 10.2196/34170. View

20.

Hagglund M, DesRoches C, Petersen C, Scandurra I . Patients' access to health records. BMJ. 2019; 367:l5725. DOI: 10.1136/bmj.l5725. View