Health IT Trends
by Veena Goel, M.D., FAAP
Physicians rely on patient memory to recount habits,
activities and symptoms to supplement the snapshot of
the patient’s health they get during the occasional office visit. Unfortunately, patients often are not accurate
or objective historians, and their level of engagement
in their own health is quite variable. This can lead to
delays in appropriate diagnosis and management of
Recent technologic advancements have the potential
to close the information gap between patients and their
doctors. Most people have a phone in their pocket, if
not on their wrist, and these devices record and store
information, including data relevant to health.
Patient-generated health data (PGHD) is defined
broadly by the federal Office of the National Coordinator (ONC) for Health Information Technology as
“data created, recorded, or gathered by or from patients
(or family members or other caregivers) to help address
a health concern” ( http://bit.ly/2jVZH97).
PGHD can pertain to lifestyle choices, biometric
data, symptoms, medication/treatment information
and health history. Unlike in the traditional clinical
setting where physicians collect and manage patient
data, PGHD is captured and recorded by patients
themselves. Furthermore, patients have ownership over
their data, deciding when and how to share it with their
health care team.
Downloadable wellness apps are allowing individuals
to track dietary intake and sleep patterns and identify
areas for improvement. Other apps and wearable sensors count steps and measure vital signs. For patients
with chronic diseases, such as those with diabetes who
struggle to keep track of their glucose measurements,
there are Bluetooth-enabled devices that can log this
information immediately and even create easily interpretable reports. These are just a few examples of health
data with the potential to augment clinical care for patients by enhancing data already available to providers.
Despite its promises, PGHD poses several technical and cultural challenges for health care providers.
First, patient-generated data are increasing patient and
family engagement in shared decision-making around
their health. As such, patients are starting to expect
providers to review their data in a timely and thorough
fashion. However, it is not easy to incorporate PGHD
into current provider workflows, and many barriers
exist to easy integration of PGHD into the electronic
health record (EHR).
Second, health care providers already are supposed
to process data from the EHR, personal health record,
disease registries and other databases. Given their busy
workload, adding PGHD to this large amount of data
is not only overwhelming but also difficult to incen-tivize. Providers also may be concerned about being
held liable for missing something important in data
provided by patients. This concern could be alleviated
through policies and standards that help govern expectations of providers.
In addition, the process of data collection and verification needs to be standardized. Providers need to be
able to trust the validity of the data they are looking
at before they will feel comfortable making medical
decisions based on it.
Finally, ensuring the privacy and security of health
data is a major concern. Data breaches in health care
are a real problem, and patients and providers need to
be educated on the risks so they can decide if they are
willing to accept them.
In 2015, the ONC along with Accenture initiated
a project funded by the Patient-Centered Outcomes
Research Trust Fund to develop a policy framework
for the collection and use of PGHD through 2024. A
recently released draft paper ( http://bit.ly/2koZviC)
outlines the perspectives of patients, providers and
researchers. It also calls on policymakers, technology
developers and standards bodies to work to harness
the potential of PGHD and overcome the challenges
Pediatricians will have to pay close attention to how
these policies will affect the way they deliver care to
children and interact with parents and families. They
also must embrace the potential of patient-generated data to improve health care while finding ways to
adapt to the challenges it introduces. This will require
open-mindedness to solutions that
could allow PGHD to support health
care delivery and research.
Dr. Goel is a member of the AAP Council
on Clinical Information Technology.
Use of patient-generated health data
promises to improve care yet challenges remain
Data collected by smart watches and other devices and apps can pose challenges for standardization, privacy and integration into electronic health
Designed for doctors and other health care
providers, an app from the Centers for Disease
Control and Prevention (CDC) serves as a quick
reference guide to tick-borne diseases.
This customizable app features concise and
comprehensive information on tick-borne diseases, including identification, signs and symptoms,
diagnostic tests, prevention and prophylaxis recommendations, treatment, which tick-borne diseases are most common in your area, and links
to supporting articles. The content is updated
automatically, so users can be assured they are
accessing up-to-date information each time the
app is used.
Users can personalize the app with highlight-
ing, note-taking and bookmark features to be
saved for future reference or shared with col-
leagues on social media.
Complete with full-color photos and illustrations, the app can be viewed in both portrait and
landscape modes on any Apple device (http://
apple.co/2kFYwdL) or Android device (http://
The app is free and can be used as supplemental
material to the CDC manual Tickborne Diseases
of the United States: A Reference Guide for Health
If you would like to share a first-hand experience
using technology, such as software, program, app,
widget, etc., to improve patient care or practice
management, email submissions of 250 words or
less to Vanessa Shorte at email@example.com.
CDC app helps diagnose, treat tick-borne diseases
from the AAP Division of Quality