Use of patient-generated health data promises to improve care yet challenges remain
VeenaGoel, M.D., FAAP
Health IT Trends
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 medical conditions.
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
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 incentivize. 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 it poses.
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.