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.

A national agenda for public health informatics: summarized recommendations from the 2001 AMIA Spring Congress.

The AMIA 2001 Spring Congress brought together members of the the public health and informatics communities to develop a national agenda for public health informatics. Discussions of funding and governance; architecture and infrastructure; standards and vocabulary; research, evaluation, and best practices; privacy, confidentiality, and security; and training and workforce resulted in 74 recommendations with two key themes-that all stakeholders need to be engaged in coordinated activities related to public health information architecture, standards, confidentiality, best practices, and research; and that informatics training is needed throughout the public health workforce. Implementation of this consensus agenda will help promote progress in the application of information technology to improve public health.

Issues and opportunities in public health informatics: a panel discussion.

A panel was convened at the American Medical Informatics Association Spring Congress to discuss issues and opportunities that arise when informatics methods, theories, and applications are applied to public health functions. Panelists provided examples of applications that connect efforts between public health and clinical care, emphasizing the need for integration of clinical data with public health data and the analysis of those data to support surveillance and informed decision making. Benefits to be gained by both medical informatics and public health at the interface were evident; both encounter the same major issues including privacy, systems integration, standards, and many more.

A national agenda for public health informatics.

The American Medical Informatics Association 2001 Spring Congress brought together the public health and informatics communities to develop a national agenda for public health informatics. Discussions on funding and governance; architecture and infrastructure; standards and vocabulary; research, evaluation, and best practices; privacy, confidentiality, and security; and training and workforce resulted in 74 recommendations with two key themes: (1) all stakeholders need to be engaged in coordinated activities related to public health information architecture, standards, confidentiality, best practices, and research and (2) informatics training is needed throughout the public health workforce. Implementation of this consensus agenda will help promote progress in the application of information technology to improve public health.

Public health informatics: improving and transforming public health in the information age.

Development of effective public health information systems requires understanding public health informatics (PHI), the systematic application of information and computer science and technology to public health practice, research, and learning. PHI is distinguished from other informatics specialties by its focus on prevention in populations, use of a wide range of interventions to achieve its goals, and the constraints of operating in a governmental context. The current need for PHI arises from dramatic improvements in information technology, new pressures on the public health system, and changes in medical care delivery. Application of PHI principles provides unprecedented opportunities to build healthier communities.

Privacy, confidentiality, and security in information systems of state health agencies.

OBJECTIVES: To assess the employment and status of privacy, confidentiality, security and fair information practices in electronic information systems of U.S. state health agencies. METHODS: A survey instrument was developed and administered to key contacts within the state health agencies of each of the 50 U.S. states, Puerto Rico and the District of Columbia. RESULTS: About a third of U.S. state health agencies have no written policies in place regarding privacy and confidentiality in electronic information systems. The doctrines of fair information practice often seemed to be ignored. One quarter of the agencies reported at least one security breach during the past two years, and 16% experienced a privacy and confidentiality related transgression. Most of the breaches were committed by personnel from within the agencies. CONCLUSIONS: These results raise questions about the integrity of existing privacy, confidentiality and security measures in the information systems of U.S. state health agencies. Recommendations include the development and vigorous enforcement of written privacy and confidentiality policies, increased personnel training, and expanded implementation of security measures such as encryption and system firewalls. A discussion of the current status of U.S. privacy, confidentiality and security issues is offered.

Public health informatics: a CDC course for public health program managers.

Information science and technology are critical to the modern practice of public health. Yet today's public health professionals generally have no formal training in public health informatics--the application of information science and technology to public health practice and research. Responding to this need, the U.S. Centers for Disease Control and Prevention (CDC) recently developed, tested, and delivered a new training course in public health informatics. The course was designed for experienced public health program managers and included sessions on general informatics principles and concepts; key information systems issues and information technologies; and management issues as they relate to information technology projects. This course has been enthusiastically received both at the state and federal levels. We plan to develop an abbreviated version for health officers, administrators, and other public health executives.

Combining tabular, rule-based, and procedural knowledge in computer-based guidelines for childhood immunization.

IMM/Serve is a computer program which implements the clinical guidelines for childhood immunization. IMM/Serve accepts as input a child's immunization history. It then indicates which vaccinations are due and which vaccinations should be scheduled next. The clinical guidelines for immunization are quite complex and are modified quite frequently. As a result, it is important that IMM/Serve's knowledge be represented in a format that facilitates the maintenance of that knowledge as the field evolves over time. To achieve this goal, IMM/Serve uses four representations for different parts of its knowledge base: (1) Immunization forecasting parameters that specify the minimum ages and wait-intervals for each dose are stored in tabular form. (2) The clinical logic that determines which set of forecasting parameters applies for a particular patient in each vaccine series is represented using if-then rules. (3) The temporal logic that combines dates, ages, and intervals to calculate recommended dates, is expressed procedurally. (4) The screening logic that checks each previous dose for validity is performed using a decision table that combines minimum ages and wait intervals with a small amount of clinical logic. A knowledge maintenance tool, IMM/Def, has been developed to help maintain the rule-based logic. The paper describes the design of IMM/Serve and the rationale and role of the different forms of knowledge used.

IMM/Serve: a rule-based program for childhood immunization.

A rule-based program, IMM/Serve, is being developed to help guide childhood immunization for initial use, within Oregon. The program is designed primarily for automated use with an online immunization registry, but can also be used interactively by a single user. The paper describes IMM/Serve and discusses 1) the sources of complexity in immunization logic, 2) the potential advantages of a rule-based approach for representing that logic, and 3) the potential advantage of such a program evolving to become the standard of care. Related projects include 1) a computer-based tool to help verify the completeness of the logic, 2) a tool that allows a central part of the logic to be generated automatically, and 3) an approach that allows visualization of the logic graphically.

US HealthLink: a national information resource for health care professionals.

US HealthLink is a new, comprehensive online medical information system designed specifically for health care professionals. Available to individuals for a fixed fee, it includes literature, news, diagnostic decision support, drug interactions, electronic mail, and bulletin boards. It also provides user-specific current awareness via clipping service, and fax delivery of both clipping and electronic mail information. US HealthLink can now be utilized to access a wide variety of medical information sources inexpensively.