Cyberinfrastructure and population healthInformation Infrastructure for Consumer Health: A Health Information Exchange Stakeholder Study
Introduction
Virtually all population health and health research functions are expertise- and information-based. While the information infrastructure to support such functions has dramatically improved during the last 20 years, comprehensive, longitudinal, person-centered information has been generally nonexistent beyond relatively small sets that were created for specific research purposes. Yet, having such information related to large populations is now coming within reach. The coupling of Internet access, evolving information transfer and semantic standards, and emerging electronic health records (EHRs) and personal health records (PHRs) is now forming the enabling infrastructure necessary for population-wide health information capture. However, for care delivery and coordination, the infrastructure component that is still missing is effective health information exchange (HIE). Therefore, the current development of an HIE infrastructure is of paramount importance to achieving an effective nationwide comprehensive, longitudinal, person-centric information resource.
While the American Recovery and Reinvestment Act of 2009 (ARRA) provides incentive for institutional EHR adoption with over $19B,1 efforts to develop a nationwide HIE infrastructure in the U.S. continue to be complicated by issues including functional insufficiency for health research, consumer non-engagement, privacy and trust, sustainable funding, industry fragmentation, and lack of social capital.2, 3 Since 2004, when President George W. Bush called for widespread use of EHRs by 2014,4 nearly 400 HIE initiatives have been planned, started, or discontinued seeking to exchange health information across different combinations of stakeholder groups, levels of exchange, and use cases (Figure 1).5 In 2008 and 2009, limited demonstrable success had occurred. As a California Healthcare Foundation report from January 2008 stated: “For those who have been part of the Health Information Technology (HIT) world for a while, hope for a nationwide EHR remains an unfulfilled goal, still beyond our collective grasp.”6 There are many reasons for this, one of which is the inherent inability of many HIE models to overcome pragmatic development and operations issues.7, 8, 9 Another is the failure of HIE models to sufficiently address the value of HIE for consumer engagement and health research that would bolster nationwide HIE adoption.
To more fully understand the value of HIE, and in particular an approach to HIE called health record banks (HRBs), our exploratory study investigated interests, concerns, perceived benefits, payment preferences, design requirements, value propositions, and challenges for a broad range of community-level stakeholders and consumers. This paper reports on this study's findings.
Section snippets
Background
The concept of electronically sharing a patient's health information among that person's healthcare providers is not new—indeed the concept is more than 50 years old.10, 11 Success in implementing the concept, to date, has been primarily limited to sharing among facilities of the same health system, or among business partners, and is embodied in the adoption of electronic medical records (EMRs) and, more recently, in the adoption of nascent EHRs.
In the 1990s, a major attempt to share such
Methods
The research occurred between August 2007 and April 2008 using a mixed-methods design developed in a community action research (CAR) context. CAR is a form of research in which community members and researchers collaboratively develop research in order to address a mutually agreed-on challenge or goal.32, 33 The populations studied were approximately 1.3 million individuals residing in a ten-county metropolitan area and 12 groups of organizations that serve their health-related needs (Table 1).
Results
The research identified 101 themes related to consumer and organizational stakeholder participation in a community HRB (Table 2, Table 3). Top interests included access to electronic medical history and health-risk assessment, prescription-tracking, and a secure, trusted environment for HIE. Top concerns included physician lack of EMRs, security and privacy, speed and quantity of information access, opt-in choice, extension beyond ten counties, and the inability of people most in need to be
Discussion
The results illustrate a tangled web of themes and perspectives associated with efforts to develop community HIE supported by multiple stakeholders and consumers. While the results confirm some findings from other studies, they also provide surprising new insights and perspectives.
In findings not inconsistent with other studies on PHR adoption,27, 35, 36 the study found significant consumer interest in the services. A majority of consumers in the phone survey said they would use an electronic
Conclusion
America must accelerate progress in the quest to improve the health status of the population by improving patient safety, healthcare quality, and healthcare efficiency. An intrinsic part of this improvement is providing people and their clinicians access to complete, accurate, timely, and longitudinal patient/person-specific clinical and financial information so that early detection, discovery, and intervention is increasingly effective. How can this be done?
This research supports the
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