Literature Review and Environmental Scan: Evaluation of Personal Health Records Pilots for Fee-for-Service Medicare Enrollees. Appendix E. Key PHR Initiatives


As this report has illustrated, the PHR space is both new and very dynamic. During the course of developing this report, a number of initiatives were identified that have the potential to significantly impact the development of PHRs. These initiatives profiled in this Appendix were selected for inclusion their number of users, the scope of the functions they offer, or other unique factors, such as an open source software approach, a design with a care management perspective, and financial (rather than a medical) model approach. A number of these initiatives are still in the early-design or implementation stage but offer new, interesting and potentially influential approaches to the design of future PHRs. The information provided is from our literature review and discussions with PHR implementers and leaders.

Kaiser Permanente’s HealthConnect

The HealthConnect PHR is part of Kaiser Permanente’s larger HealthConnect software system, designed by Epic Systems at a cost of $3 billion. Its core data elements are a shared view of the medical record. Access to the PHR provides a health history of allergies, immunizations, conditions, past visit information, and prescriptions. It also provides members with laboratory test results, behavior change modules, health education materials, information on health plan services and facilities, and patient instructions in English and Spanish. Secure messaging of providers is available for primary care providers in most regions and will soon allow messaging to specialists. Its PHR also offers members the ability to make and change appointments, tools to monitor chronic conditions, and online prescription refills.

Currently, 1.7 million of its 8.6 million members are registered for HealthConnect, with 79,000 repeat users each month. Of its 880,000 Medicare members, 220,000 are signed up. Members must opt-in to participate (this now requires members to register online and then receive an activation code by mail; in February 2007, this will become a one-step process.) The PHR provides family members who have been granted access the ability to view the full record (the exception being any mention of domestic violence.)

Veteran Health Administration’s My HealtheVet

My HealtheVet is linked with the VHA’s Computerized Patient Record System (CPRS) and VistA, a storage application for all VHA clinical documents. My HealtheVet provides online access to personal information, military health histories, medication tracking and VHA prescription refill, medical events, and immunization records. It makes available health information, links to Federal and VA benefits and resources, and a personal health journal (to track, for example, blood pressure, blood sugar, and cholesterol). Secure messaging will be released next year and online test results will be available after that. In the future, My HealtheVet registrants will be able to view appointments, co-pay balances, and key portions of their VHA medical records.

Over 41,000 veterans have signed up, 2,000 of whom are over 90 years old. The VHA is moving to national implementation and will end the pilot as this happens. Because in-person authorization is required to obtain a log-in ID and password, a major concern for the national roll-out is the lack of on-site staff to authenticate those applying for a PHR ID and password, particularly in outpatient rural clinics.[333]


LifeLedger is a stand-alone computer application housed on the internet. It was designed by geriatric case managers as a paper form. LifeLedger is targeted to family members and care managers of the aged, with the intent to communicate information to all involved in the subscribers’ care. It records and stores health records, financial and demographic information, medication histories, funeral plans, and other important documents, such as living wills and health care power of attorney forms. Subscribers or caregivers manually enter the information; in the case of documents, they are uploaded to the personal record. Caregivers and providers may add progress notes. LifeLedger also includes a library, chat room, and forums.

Along with assisting in the day-to-day management of care, LifeLedger is designed for emergencies. It provides a print out of all emergency information and suggests that this be put in an envelope on the subscriber’s refrigerator (the first place that emergency medical personnel will check when they enter a house). Also, if the subscriber is unable to provide access to his/her records in the emergency room, LifeLedger provides emergency room providers with a password that allows them a view of the subscriber’s emergency information (medications, physician information, etc.) It is noted that LifeLedger is not a comprehensive medical record, but instead, a subset of information that is critical to the care of an individual.

Microsoft HealthVault

HealthVault is a personal health technology platform that allows consumers to gather, store, and share health information online. HealthVault is not a PHR; instead, it is a place to store health information. HealthVault links to Microsoft’s partners’ applications, with HealthVault’s role being to facilitate communication to and from partners and consumers. At its October 2007 release, Microsoft had agreements for over 40 applications and devices for its platform and its partner list now numbers in the hundreds. Partners include health-management device manufacturers (Johnson & Johnson), prevention and disease groups (American Diabetes Association, American Heart Association), and PHR companies (CapMed, Medem, ActiveHealth).

According to Microsoft, HealthVault’s value to consumers is that it offers them a platform to better manage their health information. It plans for consumers to collect (upload or enter) their private health information. Consumers are said to have complete control over this health information, which they can then offer to their health care providers. HealthVault also includes a specialized medical search engine that helps consumers to more effectively search the Internet for health information by organizing online health content, and according to Microsoft, allowing consumers to refine searches faster and with more accuracy, and eventually connecting them with HealthVault-compatible solutions.

Quicken Health

Quicken Health is now under development and its broad launch (with United Healthcare first and later CIGNA) is planned for 2008. This is an online application that aims to help consumers to understand their health care expenditures, settle their bills, and spend their dollars wisely. Unlike other medical- and health-related PHRs, Quicken Health focuses on the management of health care expenditures. It is designed to partner with health plans and employers, who then provide their members or employees access to Quicken Health. Once signed up, consumers permit the download of claims and benefit information, which Quicken Health translates into a language understandable to consumers, then provides tools to help consumers manage their expenditures. For example: in the case of a denied claim, the denial code is translated and the consumer advised of follow-on action. A financial diagnostic engine is included to assist consumers’ future financial decisions.

Quicken Health is a product of Intuit, maker of Turbo Tax, Quicken, Quicken Books (for small-businesses), and Quicken Medical Expense Manager. According to Intuit’s Director of Market Development, its market research shows that consumers’ health care expenditure data is scattered and difficult for consumers to manage. Its experience with Quicken Medical Expense Manager (its individual, non-group product which requires users to hand-enter all data) is that consumers want an application that enters the data for them. Intuit believes that many (but not all) health plan members and employees will use Quicken Health. The incentive for employers--particularly self-insured employers--to partner with Intuit is particularly strong, as they anticipate that Quicken Health will facilitate a decline in employee and employer health expenditures.

Children’s Hospital Boston’s, Indivo

Indivo (formerly PING) is a PHR (it calls itself “personally controlled health records”) that enables a patient to assemble, maintain, and manage a secure copy of his or her medical data.[334] It integrates health information across sites of care and over time. It is an open source, open standards PHR that is internet based and provides a web interface. All Indivo technical documents, including design concepts and source code, are accessible on the internet, enabling straightforward local customization of Indivo, as well as interoperability between Indivo and other vendor products.

In September 2007, the Children's Hospital Informatics Program and the Dossia Consortium announced that they would be partnering to make the Indivo PHR the core of the anticipated Dossia Personally Controlled Health Record system. Dossia will provide resources to extend the core Indivo functionality and server architecture, which will remain open source and freely available. Indivo is also the PHR for Children’s Hospital Boston and was deployed as part of an employee health program at Hewlett Packard. MIT and Harvard University are adopting Indivo as the PHR for their students and employees.

Palo Alto Medical Foundation’s PAMFOnline

The Palo Alto Medical Foundation is a large multispecialty group practice that has been operating its PHR since 2002. PAMF tightly integrates its electronic medical record system with its PHR. Patients can view summary data from their medical record, including the results of diagnostic tests, and request medical advice, prescription renewals, appointments, or updates to their demographic information. It has found that patients embrace this new communication channel and are using the service appropriately. Patients especially value electronic messaging with their physicians and timely access to their test results. While initially concerned about an increase in work, physicians have found that use of electronic messaging can be an efficient method for handling non-urgent communication with their patients.

CareGroup Healthcare System’s PatientSite

Caregroup’s PHR, PatientSite, serves an integrated delivery network of five hospital (its flagship hospital is Beth Israel Deaconess Medical Center), 12,000 employees, 2 million patients, and 1,700 physicians (as of December 2005). It has been up and running since 2000, and as of January 2006, over 22,000 patients had registered for PatientSite and 16 percent of these patients accessed their records each month. The median age user is 43, with four percent of users over age 70. Along with patients, clinicians and other staff use PatientSite (200 primary care clinicians and 300 staff used PatientSite every month in 2005). PatientSite achieved this degree of adoption by ensuring it is compatible with all browsers, is easy to use, and is highly customizable.[335]

PatientSite, provides secure messaging, personal medical records, and “convenience transactions” online (this includes requesting appointments, obtaining prescription refills, requesting referrals, and viewing medical claims). It allows patients to view their physician’s schedule and request a non-urgent appointment. PatientSite also includes health education modules and links and home pages may also be customized with health education links (either by the provider or patient).[336] Patients can also input their own medications, problems, allergies, and notes; track and graph data over time (e.g., blood glucose measurements, weight, blood pressure); and upload documents to the PHR. Caregroup estimates the cost of PatientSite to be $250,000 to $720,000 per year, an average of $6 per patient per month.

Project HealthDesign: Rethinking the Power and Potential of Personal Health Records

Funded by the Robert Wood Johnson Foundation in 2006, this program is intended to stimulate innovation in the design of PHR. It aims to build a PHR (described as a PHR system) in which an array of personal health applications can be built on top of a common platform of core data elements and technical services (e.g., a medical management tool that would alert consumers at the proper time to take their medication; and a tool to help consumers minimize medication expenses by searching the Internet to identify the lowest prices). Project HealthDesign’s design and prototyping efforts focus on the needs, preferences, and living environments of consumers.[337]

Project HealthDesign funds nine multidisciplinary teams of technology, health and design experts, each of which will design and test PHR systems before prototyping tools in communities. The design experience is set up to ensure that the teams’ design strategies engage and respond to the self-identified populations of interest. Teams will seek strategies for capturing consumers’ information throughout the course of daily living and address how a PHR can best fit with consumers’ day-to-day activities. Projects emphasize health promotion. The ActivHealth team, for example, is developing a PHR to assist sedentary adults become more physically active.[338]

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