The CARIN Alliance
The CARIN Alliance is a non-partisan, multi-sector alliance co-founded by David Blumenthal, David Brailer, Aneesh Chopra, and Mike Leavitt. The Alliance is led by distinguished risk-bearing providers, payers, consumers, pharmaceutical companies, consumer platform companies, health IT companies, and consumer-advocates who are working collaboratively with other stakeholders in government to overcome barriers in advancing consumer-directed exchange across the U.S.
Our vision is to rapidly advance the ability for consumers and their authorized caregivers to easily get, use, and share their digital health information when, where, and how they want to achieve their goals. Specifically, we are promoting the ability for consumers and their authorized caregivers to gain digital access to their health information via non-proprietary application programming interfaces or APIs. We envision a future where any consumer can choose any application to retrieve both their complete health record and their complete coverage information from any provider or plan in the country.
What is Consumer-Directed Exchange?
Consumer-directed exchange occurs when a consumer or an authorized caregiver invokes their HIPAA Individual Right of Access (45 CFR § 164.524) and requests their digital health information from a HIPAA covered entity (CE) via an application or other third-party data steward.
Announcement: December 13, 2023 – CARIN Letter to HHS on Provider Information Blocking Disincentives
The CARIN Alliance provided comment to ONC and CMS on their provider information blocking disincentive proposed rule with recommendations on its complaint submission process, applicable providers, and prioritization of enforcement activity. In our comments we provided a number of innovative ideas including a ‘complaint clearinghouse’ concept that requests ONC to allow providers and payers an option to submit complaints to an independent third-party who would aggregate those complaints and then submit them as a group. This would avoid individual providers and payers knowing which of their trading partners submitted the complaints but would also identify clear violations of information blocking to advance information sharing with providers, payers, and most importantly patients. See the link above for our full comments.
Announcement: December 13, 2023 – Best Practice Recommendations for HL7® FHIR® Based Deployment
CARIN is publishing a Best Practice Recommendations for HL7® FHIR® Based Deployment for how to improve the current HL7® FHIR® ecosystem to prepare the industry for implementing HL7® FHIR® at scale. We believe if followed, these best practices will dramatically improve FHIR connectivity across the country with provider, payers, and patients.
Announcement: October 2022 – EHNAC CARIN Alliance Code of Conduct Application Accreditation Program (CCCAP)
– SIMSBURY, Conn. and WASHINGTON – October 3, 2022 – The Electronic Healthcare Network Accreditation Commission (EHNAC), a non-profit standards development organization and accrediting body for organizations that electronically exchange healthcare data, and The CARIN Alliance, a collaborative working to advance consumer-directed exchange of health information, today announced the creation of a new CARIN Code of Conduct Accreditation Program (CCCAP).
EHNAC CARIN partnership press release
Attention ViVE and HIMSS attendees!! – We are excited to announce March 8, 2022 the kick off of our Digital Identity federation proof of concept with the Department of Health and Human Services (HHS), ONC and CMS as government observers, and multiple private sector entities.
You can read more about this project and our digital identity work to date on our CARIN Alliance Digital Identity page.
Announcement: July 22, 2021 – The CARIN board and community are happy to announce three new deliverables that can be used by stakeholders to continue to empower individuals with access to more of their own health data with less friction.
Read more about the deliverables on our CARIN Blog Post and view our App Registration IG
Announcement: January 4, 2021 – The CARIN Comments for CMS-9123-P
CARIN Comments for CMS-9123-P
Announcement: December 1, 2020 – The CARIN Alliance: Advancing consumer-directed exchange in 2020
The CARIN Alliance has accomplished a significant amount of work in that later half of 2020 and we are excited to share with you the details of our progress in providing consumers and their caregivers more data with less friction. Learn more about our efforts, including updates on CARIN IG for Blue Button®, CARIN’s approach to Digital Identity and Federation, the CARIN Code of Conduct and more in our blog post here.
Announcement: December 1, 2020 – Digital Identity and Federation White Paper
The 21st Century Cures Act, the ONC Cures Act Final Rule, and the CMS Interoperability and Patient Access rule have accelerated the ability for an individual to access their personal health information via an application of their choice leveraging HL7® FHIR® Application Programming Interfaces or APIs. To support consumer access, we must ensure that people are who they claim to be so the right information can be shared with the right person at the right time. CARIN supports “person-centric” digital identity credentials to facilitate this ecosystem; an individual has a portable, high-assurance digital identity credential they can use to control when and how their personal information is shared across systems.
The CARIN Alliance is working on development of a federated trust agreement to foster and federate trust in digital identity credentials. The federated trust agreement will address standardization and best practices related to security, data protection, authentication, identity proofing, privacy, user experience, interoperability and the conformance regime to ensure these specifications and policy obligations are certified and can be enforced.
Read more about the importance of this work in our draft Digital Identity and Federation White Paper
Announcement: May 27, 2020 – Official Launch of the My Health Application Website
Today, the CARIN Alliance, a non-partisan, multi-sector alliance focused on providing digital health information to consumers where, when, and how they want to achieve their goals, launched the My Health Application website. The website offers a vendor and platform agnostic location to help consumers select a health care application of their choice to aggregate their clinical, coverage, and payment information. Read the full announcement here.
Announcement: Read Governor Leavitt and Aneesh Chopra’s Op-Ed on FierceHealthcare
Today, the Trump administration finalized two landmark regulations from the Centers for Medicare & Medicaid Services (CMS) and the Office of the National Coordinator for Health IT (ONC), which require providers, health plans and for the first time, government-sponsored health plans, to provide individuals with digital access to their health information through an application or device of their choice. Read the full article here.
Announcement: Consumer-Directed Exchange – An Approach for a Volunteer, Trusted, Private-Sector-Led Pathway
Carequality has brought together the health care industry to overcome the challenge of interoperability by providing a national-level, consensus-built, common interoperability framework to enable exchange between and among health data sharing networks. This framework determines the technical and policy agreements to enable data to flow between and among networks, platforms, and geographies. Carequality provides consumer-facing third-party applications with a voluntary approach to connecting with various data holders via a single, trusted ‘on-ramp’ rather than connecting separately to many disparate systems.
The CARIN Alliance has been working with other interested stakeholders on how to advance the ability for consumers and their authorized caregivers to easily get, use, and share their digital health information when, where, and how they want to achieve their goals. The individual right of access under HIPAA and the ONC and CMS proposed rules have helped to accelerate the ability for consumers to get digital access to their health information. We anticipate the final ONC and CMS rules will help lay the groundwork to continue to advance the ability for consumers to access ‘more data with less friction’ in the years ahead. Read the full blog post here.
Announcement: CARIN OMB Meeting on January 27, 2020, Washington, D.C.
The CARIN Alliance is meeting with the Office of Management and Budget (OMB) on Monday, January 27, 2020 at 3:00pm ET in Washington, D.C.
Click here to read more about our vision for consumer-directed exchange in 2020 and beyond.
Announcement: July 30, 2019, Washington, D.C.
The CARIN Alliance is excited to announce the private sector released the CARIN Blue Button® data model and draft implementation guide as part of the White House Blue Button® Developers Conference. The Consumer Directed Payer Data Exchange (CARIN IG for Blue Button®) draft implementation guide includes more than 240 claim data elements that have been agreed on by multiple regional and national health plans. These data elements are included in what we are calling the common payer consumer data set or CPCDS. We have taken these data elements and mapped them to HL7® FHIR® resources to better assist health plans implement the CMS Interoperability and Patient Access proposed rule. Read the full announcement here.