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. This project identified best practices, gaps, and opportunities to advance the collection and use of PGHD that may improve health outcomes and lower 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:
- Patient Recruitment for Research Studies and Trials
- Collection and Validation of Data and Tools
- Data Donation
- Ability to Combine PGHD with Medical Record Data in Multiple Ways
- Data Interoperability
- Big Data Analysis
- Regulatory Overview
The project also undertook two pilot demonstrations. Validic and Sutter Health partnered to test personalized care that leveraged remotely-collected PGHD across patients participating in a diabetes-focused research study. In the second pilot, TapCloud LLC, worked with AMITA Health, to gather PGHD across several medical conditions such as orthopedic surgery, stroke, behavioral health, and kidney transplant. This work along with analysis of nearly 200 public comments on the draft white paper that was published in January 2017 informed the following deliverables:
Conceptualizing a Data Infrastructure for the Capture, Use, and Sharing of Patient-Generated Health Data in Care Delivery and Research through 2024 White Paper [PDF - 2.7MB]* describes the current 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.
Conceptualizing a Data Infrastructure for the Capture, Use, and Sharing of Patient-Generated Health Data in Care Delivery and Research through 2024 Practical Guide [PDF - 611KB]* offers suggested practices and questions to consider for the implementation of the capture, use, and sharing of PGHD in clinical and research settings.
To learn more about PGHD and the project see the following infographics.
- What Are PGHD [PDF - 229 KB]*
- A Practical Approach To The Use Of Patient-Generated Health Data (PGHD) [PDF - 549 KB]*
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