patient-generated health data (PGHD)

Patient-generated health data (PGHD) is data created, recorded or gathered by or from patients, family members or caregivers to help address a medical concern. This data complements clinical data, providing a more comprehensive view of patients’ health. Patients, rather than providers, are mainly responsible for capturing or recording PGHD and determining how to share or distribute the data to health care providers. PGHD can include personal health records (PHR), treatment history, biometric data, symptoms and lifestyle choices. Data from blood glucose monitoring or blood pressure readings using home health equipment or exercise and diet tracking using a mobile app or wearable device are examples of PGHD.

Patients have always shared some information with their health providers, for example, when patients report their medical and family health history, when patients report side effects of certain medications or when caregivers express concern about symptoms patients might be showing. However, the proliferation of healthcare IoT, remote monitoring devices and smart device applications for reporting information are helping to fuel the growth of PGHD, which will increasingly be created, recorded and shared electronically.

Integrating PGHD into healthcare delivery can lead to better remote patient monitoring (RPM) management without adding to the frontline clinician’s workload. PGHD can help to reduce readmission rates as well as hospitalization days and costs.

Challenges of implementing PGHD

Although the use of PGHD has the potential to provide a holistic view of a patient’s health and quality of life over time, increase visibility into how well a patient is following a treatment plan and enable timely intervention before a costly care episode, there are challenges that need to be addressed as well. Providers will need to set up analytical tools, build processes into their workflow and evaluate what information should be included in patient electronic health records (EHR). Additionally, providers need to determine when to promote PGHD use as part of a care plan.

Providers may also be concerned about any potential negative impact to the efficiency of their workflow, increased liability and setting realistic patient expectations. Data quality is crucial and some patients' low health and technical literacy could negatively affect the accuracy of PGHD. Other obstacles include the need to manage potential security risks, address patients’ privacy concerns and standardize the data collected from multiple devices.

This was last updated in December 2018

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