Patient-Generated Health Data

Project Background

Patient-generated heath 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 can supplement existing clinical data, filling in gaps in information and providing a more comprehensive picture of ongoing patient health.

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.