The Office of the National Coordinator for Health Information Technology (ONC) has announced its interest in funding projects related to a FHIR consent resource and enhanced patient engagement technologies for care and research.
Using its Leading Edge Acceleration Projects (LEAP) in Health Information Technology (IT) funding mechanism, ONC anticipates issuing one award per area of interest, up to $1 million per award in fiscal year 2019. The project period can be up to two years.
ONC noted that the FHIR standard has emerged as a clear choice for EHR developers as the marketplace moves towards providing patients and their providers access to health information and new tools. Patients will begin to combine their records in a single app or share their data with other providers. “While we do not know exactly what a secure, standardized API future will bring, we anticipate that patients will demand much more control over how their data are shared with apps, providers, and payers, based on their own choices and market competition.”
The FHIR standard has established the Consent Resource to record the consumer’s choices in a computationally tractable manner. It is used to express written or verbal agreements that authorize or restrict actions based on purpose of use, and provide handling instructions to which a recipient of the patient’s health information must comply. The FHIR Consent Resource has been developed to address the following use cases:
• Privacy Consent Directive: Agreement to collect, access, use, or disclosure (sharing) of information;
• Medical Treatment Consent Directive: Consent to undergo a specific treatment (or record of refusal to consent);
• Research Consent Directive: Consent to participate in research protocol and information sharing required ; and
• Advance Care Directives: Consent to instructions for potentially needed medical treatment (e.g, Do Not Resuscitate).
While the Consent Resource along with the “Security and Privacy” module within the FHIR standard are envisioned to support the use cases specified above, there has not yet been a focused investigation to determine if they are appropriately designed to meet consumer needs. The goal of this area of interest is for the grant recipient to perform this deep investigation of the current capabilities of the FHIR standard, and provide the necessary guidance for the industry to implement the standard in a scalable manner. More specifically, the recipient will:
• Familiarize itself with the current state of standards and industry approaches, assess the current limitations of existing approaches and the pros and cons of the alternatives currently being considered;
• Implement all the use cases specified above using FHIR Consent Resource and document any limitations of using the Consent Resource;
• Identify and update the FHIR Consent Resource based on the implementation results;
• Identify and document the use of any additional parts of the FHIR standard, required for successful implementation of use cases, including, but not limited to the FHIR Security and Privacy Modules and FHIIR Contract Resource;
• Develop working prototypes accessible to the general public; and
• Provide additional insight to support successful adoption of the FHIR Consent Resource standard by industry.
Area 2: Design, Develop, and Demonstrate Enhanced Patient Engagement Technologies for Care and Research
ONC notes that leading and informing the field of best practices around designing, developing and implementing a new spectrum of engagement technologies will be essential in ensuring products achieve the lofty expectations of a 21st century care system. This area of interest seeks to transform patient engagement technologies for a 21st century care system through innovative design, development, and demonstrations.
Applicants will explore approaches for state-of-the-art engagement solutions that:
• Modernize patient engagement tools;
• Engage diverse populations, including the underserved;
• Enhance opportunities for underrepresented populations to participate in research, including leveraging standards to develop a common centralized patient profile for research and integrating unique ID and e-consent management platforms;
• Address security and privacy concerns;
• Utilize user-centered design principles;
• Allow for data transport from various devices (sharable in machine-readable format and directed by the patient);
• Support secure cross-system communication with researchers and/or clinicians; and
• Support the return of information to individual research participants.
The deadline for applying is May 28, 2019. Send inquiries to [email protected].
