1. Tiase, Victoria L. MSN, RN-BC
  2. Hull, Susan C. MSN, RN-BC, NEA-BC

Article Content

Although there have been great strides with regard to health information exchange across institutions and communities, there is a new paradigm shift to support the consumer at the center of health information exchange, or consumer-directed exchange (CDEx). Key drivers for CDEx include the automation of an individual's right of access to retrieve his/her own electronic healthcare information and provisions in the 21st Century Cures Act to develop open industry standards to stimulate access to health data and create a "single, longitudinal record."1 Collaborations are forming to advance health data exchange through CDEx. Nursing informaticists are in a unique position to assist consumers, caregivers, and healthcare providers in these new opportunities. This article describes the main aspects of CDEx, the Alliance for Nursing Informatics (ANI) effort within the CARIN (Creating Access to Real-Time Information Now) Alliance, and ways in which nursing informaticists can contribute to these activities.


ANI has a long history of consumer advocacy. Specifically, ANI has advocated for the ability of consumers to easily access, use, and share their e-health information when, where, and how they want it. This includes a partnership with the American Nurses Association in serving as a pledge partner to the US Health and Human Services, Office of the National Coordinator (ONC) Consumer e-Health, and Blue Button community.2 The ANI also supported the recent GetMyHealthData campaign led by the National Partnership for Women and Families, recognizing that "online access has a positive impact on a wide range of activities that are essential to better care and better health," and with access to their data, patients can ask questions, share concerns, and provide pertinent information to their providers at their convenience.3-5 Consumer-directed exchange has also been linked to a new generation of value-added healthcare mobile applications, devices, and services that afford greater ease in information access through application programming interfaces (APIs) and aggregation. In 2017, Meaningful Use Stage 3, supported by 2015 Edition of Certified Health IT, requires that electronic health record (EHR) vendors provide APIs to allow for third-party applications to access health information for consumers and providers with no special effort.6 With the implementation of these new APIs, consumers can ask for their available health information to be sent to any consumer-authorized digital health application or data aggregator of their choice. According to a publication by the Commonwealth Fund, "Having openly accessible APIs could provide consumers (and other trusted entities they designate) with unrestricted, no-cost access to their own personal digital health information, thereby empowering better health, better care, and smarter spending."7 It is clear that consumers want and need their information, and with information technology in place, the next piece of the puzzle is development of processes, workflows, and procedures to make CDEx a reality.


In early 2016, interested parties gathered to devise ways to move CDEx forward, and soon afterward, the CARIN Alliance was formed. The CARIN Alliance was convened as a public-private partnership by David Brailer, David Blumenthal, Aneesh Chopra, and Mike Leavitt and is collaboratively managed by Leavitt Partners. The CARIN Alliance is a network of leading consumer advocates, covered entities, and noncovered entities, such as application providers and vendors, who work with public partners to advance CDEx. The 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. The CARIN Alliance is developing the workflows, trust frameworks, and capabilities for multiple covered entities to exchange information directly with the consumer through third-party APIs. The CARIN Alliance recognizes a "trust framework" to protect consumers as a key ingredient to CDEx because designated apps may operate outside the scope of HIPAA regulations. CARIN participated in feedback to the ONC's work related to the 21st Century Cures Act Trusted Exchange Framework and Common Agreement (TEFCA), with an expected draft release of early 2018.1 Once established, consumers can begin to access, use, and share health information via mobile phone, tablet, or other electronic device running on the consumer platform of their choice.


Participation in the CARIN Alliance is a natural move for ANI to continue its consumer e-health advocacy efforts. ANI representatives participate in the quarterly board and community CARIN Alliance meetings, and in addition, ANI member constituents are invited to contribute to CARIN


Alliance workstreams such as privacy, technology, consumer access and education, and policy. The four workgroups are working on overcoming barriers to CDEx as described in the following table. Interested ANI members can reach out to the authors.


CARIN Alliance Workstreams


Nursing informaticists are in a unique position to support CDEx efforts. From a technical perspective, bringing our expertise on standards, data exchange, and usability will enable adoption of optimal data exchange and aggregation for patients, their caregivers, and clinicians. Diverse application and EHR vendors and healthcare providers can benefit from an analysis of both clinician and patient workflows to enable the flow and use of existing and novel data elements. From an education perspective, nursing informatics can contribute to support and training of both clinicians and patients to coordinate care using CDEx.

Table. No title avai... - Click to enlarge in new windowTable. No title available.

The ANI believes nurses are poised to make important contributions in advancing CDEx. Join us in supporting nurses to realize the full potential of patient ownership of their data for better health and optimal patient care and outcomes.




1. US Department of Health and Human Services Office of Inspector General. Implementation of the 21st Century Cures Act: Achieving the Promise of Health Information Technology: Testimony of James A. Cannatti III Senior Counselor for Health Information Technology Office of Inspector General US Department of Health and Human Services. 2017. Accessed December 11, 2017. [Context Link]


2. Anderson C, Hull S, Murphy J, Sensmeier J. Ask for your health records week campaign. CIN: Computers, Informatics, Nursing. 2012;30(11): 577-578. [Context Link]


3. Hull SC. Blue button: empowering consumers for shared decision making and improved health. In: Krohn R, Metcalf D, eds. mHealth Innovation: Best Practices From the Mobile Frontiers. Chicago, IL. Health Information and Management Systems Society (HIMSS); 2014. [Context Link]


4. Austin R, Hull SC, Westra B. Blue Button Movement: engaging ourselves & patients. CIN: Computers, Informatics, Nursing. 2014;32(1): 7-9. [Context Link]


5. Centers for Medicare & Medicaid Services. Medicare and Medicaid Programs; Electronic Health Record Incentive Program-Stage 3 and Modifications to Meaningful Use in 2015 Through Medicare and Medicaid Programs; Electronic Health Record Incentive Program-Stage 3 and Modifications to Meaningful Use in 2015 Through 2017. Federal Register. 2015;80(200): 62761-62955. Accessed January 22, 2018. [Context Link]


6. National Partnership for Women & Families. Get My Health Data Campaign. 2017. Accessed December 11, 2017. [Context Link]


7. The Commonwealth Fund. Making Health Data Useful to Patients Through Open APIs. 2018. Accessed December 11, 2017. [Context Link]