Methods Inf Med 2/2014 © Schattauer 2014 66 Focus Theme – Original Articles Health Record Banking Lessons Learned from a Health Record Bank Start-up W. A. Yasnoff 1 ; E. H. Shortliffe 2 1 President, Health Record Banking Alliance (Arlington, VA); Managing Partner, National Health Information Infra- structure (NHII) Advisors (Arlington, VA); Adjunct Professor, Division of Health Sciences Informatics, Johns Hopkins University (Baltimore, MD); 2 Chair, Advisory Board, Health Record Banking Alliance (Arlington, VA); Professor and Senior Advisor, College of Health Solutions, Arizona State University (Phoenix, AZ); Adjunct Professor, Columbia University (Biomedical In- formatics) and Weill Cornell Medical College (Division of Quality and Medical Informatics, Department of Public Health); Scholar in Residence, New York Academy of Medicine (New York, NY) Keywords Health record bank, health information infra- structure, health information exchange, per- sonal health records, electronic health rec- ords, business model, clinical system imple- mentation Summary Introduction: This article is part of a Focus Theme of Methods of Information in Medi- cine on Health Record Banking. Background: In late summer 2010, an organ- ization was formed in greater Phoenix, Ar- izona (USA), to introduce a health record bank (HRB) in that community. The effort was initi- ated after market research and was aimed at engaging 200,000 individuals as members in the first year (5% of the population). It was also intended to evaluate a business model that was based on early adoption by con- sumers and physicians followed by additional revenue streams related to incremental ser- vices and secondary uses of clinical data, al- ways with specific permission from individual members, each of whom controlled all access to his or her own data. Objectives: To report on the details of the HRB experience in Phoenix, to describe the sources of problems that were experienced, and to identify lessons that need to be con- sidered in future HRB ventures. Methods: We describe staffing for the HRB effort, the computational platform that was developed, the approach to marketing, the engagement of practicing physicians, and the governance model that was developed to guide the HRB design and implementation. Results: Despite efforts to engage the phy- sician community, limited consumer advertis- ing, and a carefully considered financial strategy, the experiment failed due to insuffi- cient enrollment of individual members. It was discontinued in April 2011. Conclusions: Although the major problem with this HRB project was undercapitaliza- tion, we believe this effort demonstrated that basic HRB accounts should be free for members and that physician engagement and participation are key elements in con- structing an effective marketing channel. Local community governance is essential for trust, and the included population must be large enough to provide sufficient revenues to sustain the resource in the long term. Correspondence to: William A. Yasnoff 1854 Clarendon Blvd. Arlington, VA 22201-2914 USA E-mail: william.yasnoff@nhiiadvisors.com Methods Inf Med 2014; 53: 66–72 doi: 10.3414/ME13-02-0030 received: August 31, 2013 accepted: November 28, 2013 prepublished: January 30, 2014 1. Background 1.1 Rationale for HRBs Establishing a health information infra- structure (HII) that assures the availability of comprehensive electronic patient rec- ords when and where needed has proven to be a challenging problem. Several key ob- stacles have been identified: 1) privacy – the privacy of each individual’s medical records must be protected; 2) stakeholder cooperation – physicians, hospitals, labora- tories, pharmacies, imaging centers, etc., must all contribute their patient records; 3) incomplete information – all the records must be electronic in order to facilitate or- ganizing and delivering comprehensive records for each patient; and 4) financial sustainability – operational funding must be available on an ongoing basis [1]. In a recent report, 75% of HII projects in the U.S. reported this latter issue as an es- pecially critical obstacle [2]. Health record banks (HRBs) have been defined as “independent organizations that provide a secure electronic repository for storing and maintaining an individual’s lifetime health and medical records from multiple sources and assure that the indi- vidual always has complete control over who accesses their information” [3]. Since the concept was originally described by Szolovits [4] and first called a “health infor- mation bank” a few years later by Dodd [5], it has been studied and cited worldwide [6–13]. Recently, health record banks have been proposed as a solution to the health information infrastructure problems noted above [14]. In contrast to the commonly used distributed architecture for managing electronic health records, where each pa- For personal or educational use only. No other uses without permission. All rights reserved. Downloaded from www.methods-online.com on 2014-03-25 | IP: 173.66.128.38