Lessons learned from a health record bank start-up.

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.

[1]  Rein Turn,et al.  Privacy and security in centralized vs. decentralized databank systems , 1976 .

[2]  Jonathan D. Gold,et al.  Banking on health: Personal records and information exchange. , 2006, Journal of healthcare information management : JHIM.

[3]  Kevin C. Desouza,et al.  Centralization momentum: the pendulum swings back again , 2005, CACM.

[4]  M J Ball,et al.  The "bank of health". A model for more useful patient health records. , 2000, M.D. computing : computers in medical practice.

[5]  Lawrence O. Gostin,et al.  Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule , 2009 .

[6]  Vijay Lapsia,et al.  Where should electronic records for patients be stored? , 2012, Int. J. Medical Informatics.

[7]  Julia Adler-Milstein,et al.  Operational health information exchanges show substantial growth, but long-term funding remains a concern. , 2013, Health affairs.

[8]  A Shabo,et al.  A Global Socio-economic-medico-legal Model for the Sustainability of Longitudinal Electronic Health Records , 2006, Methods of Information in Medicine.

[9]  Jon Doyle,et al.  Guardian Angel: Patient-Centered Health Information Systems , 1994 .

[10]  A. Shabo,et al.  A Global Socio-economic-medico-legal Model for the Sustainability of Longitudinal Electronic Health Records , 2006, Methods of Information in Medicine.

[11]  Michael R Kidd,et al.  Personal electronic health records: MySpace or HealthSpace? , 2008, BMJ : British Medical Journal.

[12]  Latanya Sweeney,et al.  Putting health IT on the path to success. , 2013, JAMA.

[13]  Alex Quilici Health Information Infrastructure. , 1997 .

[14]  Isaac S Kohane,et al.  Tectonic shifts in the health information economy. , 2008, The New England journal of medicine.

[15]  R. Steinbrook Personally controlled online health data--the next big thing in medical care? , 2008, The New England journal of medicine.

[16]  S. Woolf,et al.  A vision for patient-centered health information systems. , 2011, JAMA.