Patient-Generated Health Data

What Are Patient-Generated Health Data?

Patient-generated health data (PGHD) are health-related data created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a health concern.

PGHD include, but are not limited to:

  • health history
  • treatment history
  • biometric data
  • symptoms
  • lifestyle choices

Examples of PGHD include blood glucose monitoring or blood pressure readings using home health equipment, or exercise and diet tracking using a mobile app or wearable device.

Benefits of Patient-Generated Health Data

PGHD can supplement existing clinical data, filling in gaps in information and providing a more comprehensive picture of ongoing patient health. However, PGHD are distinct from data generated in clinical settings and through encounters with providers in two important ways:

  1. Patients, not providers, are primarily responsible for capturing or recording these data.
  2. Patients decide how to share or distribute these data to health care providers and others.

The use and sharing of PGHD in care delivery and research can:

  • Gather important information about how patients are doing between medical visits.
  • Provide information for use in shared decision-making about preventive and chronic care management.
  • Offer potential cost savings and improvements in quality, care coordination, and patient safety.

Our Patient Engagement Playbook offers tips for providers incorporating PGHD use in medical practices.

Project Dates

This project began in 2015 and ended in 2018.

Project Goal

The goal of this project was to identify best practices, gaps, and opportunities to advance the collection and use of PGHD that may improve health outcomes and reduce costs while:

  • Protecting the patient and the integrity of the patient record;
  • Maximizing the provider-patient relationship;
  • Building confidence among providers and researchers to use these data; and
  • Encouraging individuals to donate their health data for research.

This project researched challenges and opportunities within seven PGHD topic areas:

  1. Patient recruitment for research studies and trials
  2. Collection and validation of data and tools
  3. Data donation
  4. Ability to combine PGHD with medical record data in multiple ways
  5. Data interoperability
  6. Big data analysis
  7. Regulatory overview

This project synthesized the lessons learned from two pilot demonstrations and the analysis of nearly 200 public comments on a draft white paper published in January 2017.

Learn More

White Paper

To learn about the policy landscape, challenges and opportunities organized by stakeholder group, and considerations for a future policy framework that could further inform guidance in support of the capture, use, and sharing of PGHD, read the White Paper and download the infographic.*

Practical Guide

To find suggested practices and questions to consider for the implementation of the capture, use, and sharing of PGHD in clinical and research settings, read the Practical Guide and download the infographic.*

*Persons using assistive technology may not be able to fully access information in this file. For assistance, submit an issue on the Health IT Feedback Form.

Please contact with questions about this project.