Exchanging electronic health data with patients, parents: What are best practices?
Emily C.Webber, M.D., FAAP
Pediatricians and others caring for children may not be able to realize the promise
of electronic health records (EHRs) and other health information technology (HIT)
because of the complexities of sharing information and maintaining confidentiality
in pediatric care.
Finding EHR and non-EHR tools for communicating the health record with pediatric and
adolescent patients and their parents can be frustrating and challenging.
A new AAP policy statement, Electronic Communication of the Health Record and Information With Pediatric Patients
and Their Guardians, offers recommendations to enable communication among patients, their families and
the clinical teams and physicians who care for them. Through these recommendations,
physicians as well as EHR vendors and legislators may gain a shared goal of secure
yet accessible sharing of clinical data.
The policy statement, from the Council on Clinical Information Technology, Committee
on Medical Liability and Risk Management, and Section on Telehealth Care, is available
at https://doi.org/10.1542/peds.2019-1359 and will be published in the July issue of Pediatrics.
No one-size-fits-all solution
The fact that pediatric patients change and mature at different rates poses a challenge
to a simple technology solution. The ability to gauge the readiness of a pediatric
patient to receive health information — digitally or otherwise — depends on the patient
and the circumstances and relies on the relationship with and expertise of the physician
and clinical team. Unlike a weight-based drug dosing alert or an age-based vaccination
reminder, it is difficult to design rules that treat all 14-year-olds the same with
regard to their clinical records.
Compounding this complexity are laws and regulatory practices that vary from state
to state, as do recommended practices by EHR and other vendors. There is not a wide
body of evidence pointing to a specific clinical data-sharing technology to meet these
evolving patient needs and legal rules.
Policy recommendations are technology inclusive
The recommendations in the policy are intended to apply to use of any EHR or technology
Pediatricians should strive to use secure platforms and know the limits of those platforms.
If using a nonsecure platform, such as text message, both sender and receiver must
ensure it is used for the right type of content and context or risk weighty financial
and trust consequences due to breaches.
Diagnoses and clinical data that are shared most effectively in a conversation should
not be done solely through electronic communication. If test results or clinical data
about a potential new diagnosis are going to be shared electronically, the clinical
team should have a process for setting expectations for that patient, i.e., anticipatory
guidance for electronic communication.
There should be an acknowledgment that all patients have the right to access their
own clinical data, and patient and guardian assume the effective “stewardship” of
that data after being shared electronically.
Clear expectations between medical teams and patients are essential. In addition,
policies must evolve as new technology becomes available.
Federal policy-makers and HIT developers should ensure that standard EHR functionality
includes the capacity for health care teams and patients to filter clinical data that
can compromise confidentiality. Also, EHR vendors should enable safeguards for the
medical teams to restrict electronic communication when there is an acute patient
Electronic communication is part of everyday life and therefore is part of how patients
live and manage their health. Patients expect to connect electronically with efficient
and effective health care. Pediatricians and clinical teams caring for children should
be empowered to use electronic communication and to provide anticipatory guidance
about those new tools regardless of the specific software or device that is being
used. The policy aims to reflect the potential of these technologies, as well as mitigate
the complexities of the necessary security and laws that surround them.
Dr. Webber is a lead author of the policy statement and chair of the AAP Council on
Clinical Information Technology Executive Committee.