Patient-Generated Health Data

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The use and sharing of PGHD supplement existing clinical data, filling in gaps in information and providing a more comprehensive picture of ongoing patient health. 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.

ONC is addressing the opportunities and challenges that the use of PGHD may present now and in the coming years.

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.

What are the PGHD-related criteria in the health IT rules and programs?

To encourage innovation related to PGHD capture and use, new criteria have been included in ONC’s 2015 Edition Certification Rule and CMS’s Quality Payment Program Rule.

How is ONC currently supporting the use of PGHD?

ONC has identified the use of PGHD as an important issue for advancing patient engagement, care delivery, and research. ONC has initiated a series of activities, including developing a white paper [PDF - 2.3 MB]* and a practical guide [PDF - 383 KB]*, to better understand and illustrate the opportunities, challenges, and best practices for using PGHD.

*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.

What are the opportunities and challenges of PGHD use?

Patients and their caregivers can now independently and seamlessly capture and share their health data electronically with clinicians and researchers more frequently and from any location. Learn more [PDF - 2.3 MB]* about how various stakeholder groups can benefit from new opportunities yet also face some challenges arising from increasing PGHD use.

*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.

How has ONC approached supporting the use of PGHD in the past?

ONC began a public dialogue on the topic in 2012 that has informed its regulatory work over the years. An issue brief published in 2014 summarizes initial progress. A 2014 fact sheet and the Patient Engagement Playbook offer tips for providers incorporating PGHD use in medical practices.

PGHD policy project fact sheets

Learn more about the PGHD policy project through a white paper infographic* and a pilot demonstrations 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.

PGHD Reports

Patient-Generated Health Data and Health IT [PDF - 307 KB] - Patient-Generated Health Data (PGHD) has been described as health-related data created, recorded, gathered or inferred by or from patients, family personal caregivers or designees to help address a health concern. This issue brief describes work completed to date to support the use of PGHD as well as a range of opportunities and next steps that will help shape policy and standards work in 2014 and beyond.

Content last reviewed on March 21, 2018
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