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.

Networking health: learning from others, taking the lead.

The Internet provides one of the most compelling examples of the way in which government research investments can, in time, lead to innovations of broad social and economic impact. This paper reviews the history of the Internet's evolution, emphasizing in particular its relationship to biomedical computing and to the nation's health care system. Here I summarize current national research programs, emphasizing the need for greater involvement by the medical research community and leadership from federal health care agencies.

The next generation Internet and health care: a civics lesson for the informatics community.

The Internet provides one of the most compelling examples of the way in which government research investments can, in time, lead to innovations of broad social and economic impact. This paper reviews the history of the Internet's evolution, emphasizing in particular its relationship to medical informatics and to the nation's health-care system. Current national research programs are summarized and the need for more involvement by the informatics community and by federal health-care agencies is emphasized.

Medical informatics. An emerging academic discipline and institutional priority.

Information management constitutes a major activity of the health care professional. Currently, a number of forces are focusing attention on this function. After many years of development of information systems to support the infrastructure of medicine, greater focus on the needs of physicians and other health care managers and professionals is occurring--to support education, decision making, communication, and many other aspects of professional activity. Medical informatics is the field that concerns itself with the cognitive, information processing, and communication tasks of medical practice, education, and research, including the information science and the technology to support these tasks. An intrinsically interdisciplinary field, medical informatics has a highly applied focus, but also addresses a number of fundamental research problems as well as planning and policy issues. Medical informatics is now emerging as a distinct academic entity. Health care institutions are considering, and a few are making, large-scale commitments to information systems and services that will affect every aspect of their organizations' function. While academic units of medical informatics are presently established at only a few medical institutions in the United States, increasing numbers of schools are considering this activity and many traditional departments are seeking and attracting individuals with medical informatics skills.

A therapy planning architecture that combines decision theory and artificial intelligence techniques.

Through our experience with the ONCOCIN cancer therapy consultation system, we have identified a set of medical planning problems to which no single existing computer-based reasoning technique readily applies. In response to the need for automated assistance with this class of problems, we have devised a computer program called ONYX that combines decision-theoretic and artificial intelligence approaches to planning. We discuss our rationale for devising a new planning architecture and describe in detail how that architecture is implemented. The program's planning process consists of three steps: (i) the use of rules derived from therapy planning strategies to generate a small set of plausible plans, (ii) the use of knowledge about the structure and behavior of the human body to create simulations that predict possible consequences of each plan for the patient, and (iii) the use of decision theory to rank the plans according to how well the results of each simulation meet the treatment goals. This architecture explicitly manages the uncertainty inherent in many planning tasks, introduces a possible mechanism for the dissemination of decision-theoretic therapy advice, and potentially increases the number of problem solving domains in which expert system techniques can be effectively applied.