ONC seeks public comment on draft white paper considering the use of patient-generated health data to help improve patient care and outcomes research
As part of its two-year contract with ONC, AFS developed a draft white paper to identify opportunities, challenges and enabling actions for the capture of PGHD by patients or their caregivers as well as the use and sharing of PGHD by healthcare providers and researchers.
PGHD – which includes a person’s health and treatment history, biometric data, symptoms and lifestyle choices – is captured by patients or their caregivers in various ways, such as through wearable health devices, consumer-focused apps and questionnaires. ONC has identified the use and sharing of PGHD as an important issue for advancing patient engagement in healthcare delivery and research.
“Technology – from consumer apps to medical-grade devices – has enabled patients to capture health data on their own,” said Jim Traficant, AFS managing director, federal health. “This draft white paper will help lay the groundwork for ONC to develop a policy framework for effectively and safely capturing, using and sharing PGHD to improve healthcare and research.”
Accenture has contracted Validic and TapCloud to administer pilot demonstrations that will develop systems and processes to test the implementation of PGHD opportunities and challenges identified in the draft white paper. The pilot demonstrations will test and document the successes and challenges for PGHD by key stakeholders, with the results helping to inform the final white paper.
One pilot demonstration, conducted by Validic and Sutter Health, is using PGHD collected from a multitude of devices to inform diabetes care while assessing the infrastructure and workflows needed to implement and scale such initiatives. The pilot demonstration will integrate Validic’s digital health platform and VitalSnap technology within Sutter Health’s electronic health records system.
A second pilot demonstration, conducted by Tapcloud and AMITA Health, is connecting patients and clinicians outside the care setting to obtain biometric data and also identify how patients feel. TapCloud will use its comprehensive platform to gather PGHD across several medical areas such as orthopedic surgery, stroke, behavioral health, and kidney transplantation.
ONC is the principal federal entity charged with coordination of nationwide efforts to implement and use advanced health information technology and the electronic exchange of health information. The PGHD project is one in a portfolio of projects at ONC that address the data infrastructure needed for patient-centered outcomes research.
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