Lessons learned from a health record bank start-up

摘要

Introduction: This article is part of a Focus Theme of Methods of Information in Medicine on Health Record Banking. Background: In late summer 2010, an organization was formed in greater Phoenix, Arizona (USA), to introduce a health record bank (HRB) in that community. The effort was initiated 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 consumers and physicians followed by additional revenue streams related to incremental services and secondary uses of clinical data, always 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 considered 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 physician community, limited consumer advertising, and a carefully considered financial strategy, the experiment failed due to insufficient enrollment of individual members. It was discontinued in April 2011. Conclusions: Although the major problem with this HRB project was undercapitalization, we believe this effort demonstrated that basic HRB accounts should be free for members and that physician engagement and participation are key elements in constructing 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.