Teenager, Parent, and Clinician Perspectives on the Electronic Health Record
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Teenager, Parent, and Clinician
Perspectives on the Electronic
Health Record
Jennifer L. Carlson, MD,a Rachel Goldstein, MD,a Tyler Buhr,b Nancy Buhrb
Management of adolescent this practice relies on clinicians to
confidentiality and sensitive services consistently document the appropriate
has always posed challenges to medical information in the appropriate location.
clinicians. State and federal laws, as Institutions have also used custom-
well as institutional policies, may built functionality for excluding specific
dictate what information can or cannot laboratory values or medications from
be shared by a clinician with a parent being shared within the portal, but this
or guardian of an adolescent. Clinicians is a labor-intensive undertaking that
concerned about diagnosis disclosure requires constant upkeep for ever-
via insurance notifications may limit changing diagnostic codes, medication, a
Department of Pediatrics, School of Medicine, Stanford
their testing or prescription, refer and laboratory orders. Because of these University, Palo Alto, California; and bLucile Packard
sensitive services to more specialized challenges, and as a way to protect Children’s Hospital, Palo Alto, California
reproductive health clinics, or appeal to adolescent confidentiality, many Drs Carlson and Goldstein conceptualized the
noninsurance funders to cover institutions have defaulted to portal manuscript, drafted the initial manuscript, and
sensitive testing and confidential systems that share limited information reviewed and revised the manuscript; Mr Buhr and
prescriptions. All factors may be Ms Buhr helped to draft the initial manuscript and
with patients and families by blocking
reviewed and revised the manuscript; and all
burdensome to patients, families, access to medications, laboratory authors approved the final manuscript as submitted
and/or clinicians. values, notes, and/or problem lists.4,5 and agree to be accountable for all aspects of
Unfortunately, this has resulted in the the work.
With the advent of electronic health limitation of meaningful use of the EHR DOI: https://doi.org/10.1542/peds.2019-0193
records (EHRs), clinicians face for these users.6 Accepted for publication Oct 7, 2019
additional challenges for preserving
Address correspondence to Jennifer L. Carlson, MD,
adolescent confidentiality.1 Clinicians Our institution has been fortunate to
Division of Adolescent Medicine, School of Medicine,
are frequently in the difficult situation have an active Family Advisory Council Stanford University, 770 Welch Rd, Suite 100, Palo
of balancing their patient’s need for with whom we have worked closely in Alto, CA 94304. E-mail: carlson2@stanford.edu
confidentiality with creating an development of our adolescent PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online,
accurate and complete medical record functionality and protocols. It is 1098-4275).
that enhances coordination of care with important to realize that the Copyright © 2020 by the American Academy of
families and other clinicians.2 Current development of these protocols is often Pediatrics
EHR systems are often extremely a push and pull between 3 distinct FINANCIAL DISCLOSURE: The authors have indicated
limited in their ability to ensure forces: the adolescent patient, the they have no financial relationships relevant to this
confidentiality of items such as parent or guardian, and the clinician article to disclose.
medications or problem lists across the and/or institution. Although these FUNDING: No external funding.
many interfaces in which these items factors are often aligned, each may also POTENTIAL CONFLICT OF INTEREST: The authors have
could be disclosed (such as after-visit have demands or needs that are indicated they have no potential conflicts of interest
summaries, shared or open notes, contrary to those of the other 2 to disclose.
problem and medication lists within the partners. In this article, we aim to give
portal system).3 Whereas some a voice to the different stakeholders To cite: Carlson JL, Goldstein R, Buhr T, et al.
institutions have a practice of using involved in and affected by these Teenager, Parent, and Clinician Perspectives on
the Electronic Health Record. Pediatrics. 2020;
confidential note types or confidential policies in hopes of better
145(3):e20190193
encounters for sensitive information, understanding the needs going
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PEDIATRICS Volume 145, number 3, March 2020:e20190193 FAMILY PARTNERSHIPSforward. The following commentary security, the portal could provide an with technical limitations that have
was provided by adolescent medicine easy way to communicate laboratory yet to be sorted out (such as the
physicians and a parent-adolescent results or simple instructions. Rather ability to show medication lists to
dyad from our Family Advisory than patients and parents having to allow for refill requests), patient and
Council. Tyler and Nancy Buhr’s navigate a complex phone tree to family access to information through
experiences with the medical system leave me a message, they could the portal has not been fully realized.
have been in the context of managing contact me directly via messaging. This sets up a conundrum in that with
Tyler’s diagnosis of hemophilia since Ideally, the portal would allow easier limited portal functionality, there is
the time of his birth. Tyler is currently navigation of appointments and little incentive for patients and
a senior in high school. coordination of care between families to use the portal. If there is
clinicians, an essential need for our low use, there may be less motivation
patients with more complex health on the part of the clinicians and/or
HOPES FOR THE PORTAL
needs, which could result in a more institution to invest the time and
Parent complete and accurate EHR. resources to address this
complicated issue.
We did not get a patient portal
account until my son was 15 years REALITY OF THE PORTAL
old, so we were already in the PORTAL USE AND CONSIDERATIONS FOR
teenager “black-out” years (“black- Parent
TRANSITION
out” referring to the often limited I was shocked at how little I could do
information available to teenagers with my proxy access account. Paying Parent
and their proxies through the portal his bills was about it! It did allow me Because my son has hemophilia,
once a patient turns 12 years of age). to message with his care team, which transition to adult care is a big focus
I had been told about the limited was helpful (for me!). It was also of our education with his team. There
access I would have as a parent of helpful to be able to request refills are many things my son will have to
a teenager, so my expectations were during this time because my son is on learn and “own” as he approaches 18
low. I had hoped it would allow for a medication that needs to be called and manages his own care. It would
more streamlined communication in by his doctor each month (versus be great to include owning his
with his doctors and medical teams auto refill), so this meant less phone electronic health record as part of it.
and easier access to his health history calls to his doctor’s office. I also used For example, Hemophilia Clinic has
and would ultimately mean less need the billing function quite often to a transition readiness tool that
for phone calls to his care team view our statements, to make includes knowledge about the
(which is not always easy to do). payments, and to communicate with diagnosis, medication management,
I was initially confused by the layout billing when I had questions. who to call for what, how to make
of the portal. As a parent with proxy appointments, and understanding
access, was I supposed to have the
Teenager insurance. A section on patient
same functionality as my son? My I had not had the need to have access portals should be included. It would
portal was basically useless, so to my health information, so I did not also be beneficial for his doctors and
without using his access (by signing use the portal; my mom did. Recently, nurses to talk to him about the portal,
in as him), I would not have used the I have needed to find my show it to him at visits, explain how
portal myself. immunization history for college, so they use it, and encourage his usage.
now I am seeing that having access to The more his team embraces the
Teenager this information online will be portal and advocates for its use, the
I did not really understand how I helpful. I think I will use it more when more likely it is that we will too.
would use the patient portal. My mom I am on my own at college.
had been managing my health record Teenager
until that point. It is hard for kids to Clinician I do not care if my mom helps manage
manage everything. The main benefit we have noted thus my care and has access to my records.
far has been the ability to It could be something that we manage
Clinician communicate nonsensitive together as I transition and learn to
With the portal, we hoped to improve information with patients and manage everything on my own. I trust
the flow of information between families (as long as they are actually my parents and am pretty open with
clinicians and patients and parents. signed up to use the portal and make them, so I do not have concerns, but
Removing the barriers of “phone-call- use of it). Because of issues around some teenagers will. It should be
tag” and concern of voicemail confidentiality for teenagers, along made really clear to teenagers who is
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2 CARLSON et alseeing their account and e-mail streamline communication between Likewise, parents do not want to
messages. There should be a private team members and see the EHR as an hamper the transition efforts of their
messaging system even if parents important advancement for children but want to remain involved
have access. If there is a particular improving care. To maximize this in and supportive of the transition
e-mail you do not want parents to see, functionality, we encourage process. Efforts to make the portal
it would be good to have a “make institutions to actively sign up and EHR as open and transparent as
private” option. I would want my teenagers and proxies for an account possible for teenagers and their
doctor to let me know that our and encourage clinicians to families will be a valuable step to
communication can be private and familiarize themselves with this making the EHR an effective tool for
not shared with my parents. workflow, which, ultimately, may this age group. Although
Having the mobile app is convenient improve efficiency. Specific training confidentiality practices need to be in
and good for teenagers. Text for patients and families on how to place, perhaps they can be more
appointment reminders would be use the portal or other EHR- graded than the current state. For
good, and making communication compatible functions will be an example, if confidentiality is deemed
available via text is important. Having essential educational tool to improve to be a concern, filters can be
an area on the app that stores your familiarity with the technology. implemented that exclude sensitive
most used areas (such as refill Improved clarity on what can and appointment types, laboratory values,
prescriptions or e-mailing your cannot be seen during the adolescent or medications from being shown. If
doctor) would make it quicker to get years would be helpful for setting a patient and clinician do not identify
to where you want to go. For example, expectations for all team members. any confidentiality concerns, filters
I would use a mobile app that allowed Possible sites for disseminating can be electively removed, thus
me to easily enter data of my bleeding patient-facing materials include allowing for more information to be
history. waiting rooms, clinic rooms, and shared with parents. This will require
inpatient facilities, as well as online. thoughtful discussions at the
Clinician institution and vendor level but is
Although institutions hope that
The EHR has many key features that critical for improving functionality.
teenagers will be active users of the
could enhance the transition of care, portals, many teenagers are also
often needed most by our complex interested in an app-based interface CONCLUSIONS
patients. Adopting functionality that to interact with their health care team The opportunity for the EHR to
allows their parents to continue because they may be more likely to improve communication, patient
involvement as their child(ren) are access information through their safety, and patient engagement is
transitioning to the adult health care phone.7 Vendors and institutions significant.10 However, without
system is essential. However, we need should consider this technology addressing the challenges around
to know that when patients disclose preference and work to incorporate it adolescent confidentiality in the EHR,
their concerns to us, we will be able into the current EHR functionality if we will never be able to fully realize
to protect them as we are legally we are hoping to improve teenager this potential. These are not
bound to do. At the same time, we engagement and management in their insurmountable problems;
want to involve parents and care. In addition, teenagers are empowering stakeholders (teenagers,
guardians in the care of their wanting reassurance that sensitive families, clinicians, and institutions)
teenagers as much as possible information or e-mails will remain to be the drivers of change will be
because we know that is associated confidential, generally a common a critical step in developing a useful
with improved health outcomes. theme for adolescent care.8,9 and used EHR.
Vendor-built systems that allow for Clarifying this ability within the
more nuanced access to information portal may be helpful for reassuring
for both adolescents and proxies is teenagers and encouraging portal use. ABBREVIATION
needed. However, it seems as if EHRs
are still struggling with how to create Although clinicians constantly worry EHR: electronic health record
and implement such a system. It about the worst-case scenario for
is messy. confidentiality breaches of patients
(having confidential information
erroneously released that leads to
SHARED DECISION-MAKING AND THE emotional or physical harm to REFERENCES
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4 CARLSON et alTeenager, Parent, and Clinician Perspectives on the Electronic Health Record
Jennifer L. Carlson, Rachel Goldstein, Tyler Buhr and Nancy Buhr
Pediatrics originally published online February 5, 2020;
Updated Information & including high resolution figures, can be found at:
Services http://pediatrics.aappublications.org/content/early/2020/02/03/peds.2
019-0193
References This article cites 9 articles, 1 of which you can access for free at:
http://pediatrics.aappublications.org/content/early/2020/02/03/peds.2
019-0193#BIBL
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Electronic Health Records
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rds_sub
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dicine_sub
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Downloaded from www.aappublications.org/news by guest on March 17, 2021Teenager, Parent, and Clinician Perspectives on the Electronic Health Record
Jennifer L. Carlson, Rachel Goldstein, Tyler Buhr and Nancy Buhr
Pediatrics originally published online February 5, 2020;
The online version of this article, along with updated information and services, is
located on the World Wide Web at:
http://pediatrics.aappublications.org/content/early/2020/02/03/peds.2019-0193
Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it
has been published continuously since 1948. Pediatrics is owned, published, and trademarked by
the American Academy of Pediatrics, 345 Park Avenue, Itasca, Illinois, 60143. Copyright © 2020
by the American Academy of Pediatrics. All rights reserved. Print ISSN: 1073-0397.
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