1. Nelson, Roxanne BSN, RN


Digital information is easy to access, but is it secure?


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More than 1 million people were forced to evacuate when Hurricane Katrina devastated the Gulf Coast two years ago. About 40% of evacuees were using "one or more prescription medications" at the time of the hurricane, and in the chaotic aftermath of Katrina, evacuees found themselves separated from their health records, according to the report "Lessons from KatrinaHealth" from the Markle Foundation, the American Medical Association (AMA), Gold Standard, RxHub, and SureScripts, released June 13, 2006. Would a personal health record (PHR) have helped stanch some of the chaos?


The concept of the PHR is not a new one, as demonstrated by an August 2004 Harris Interactive Poll in which 42% of respondents reported keeping their own health records. But only 13% used some type of electronic system. Katrina helped illustrate that paper-based records can be lost easily and permanently, while electronic health records could remain accessible even during a disaster.


The PHR is similar to electronic banking in that individuals keep their private information in a secure electronic database and decide what information to include and who can have access to it. Electronic storage can be on something as simple as a computer disk that a person carries around. There are also several services that will store your records securely online for a fee. Some services also help collect your data from various offices and clinics, and at least one company, CapMed, sells software that lets you access health records from your cell phone.


"[The PHR] will improve quality because it will reduce errors," explains Jill Burrington-Brown, practice resource manager at the American Health Information Management Association (AHIMA). When a patient has a PHR, the health care provider is able to obtain more complete and accurate information, says Burrington-Brown. "You treat the information as if it was coming from the patient verbally, and it's going to help you know your patients better and improve their care."


Currently PHRs are all over the map; there is no standardized version or universally accepted definition. But efforts are under way to change that. According to the AHIMA Web site, the Markle Foundation established the Connecting for Health project in 2002 to promote "electronically connected health information systems" and establish policies on their use.

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The National Health Council, a consortium of voluntary health organizations and other groups, is focusing on PHRs through an initiative called Putting Patients First, which calls for health information to be portable, belong to the patient, and empower the patient to make informed decisions regarding care. The council is recommending the standardization of specifications for electronic platforms that will be used for PHRs so that changing systems (as may happen when a person changes insurance plans) can be accomplished easily. The council also recognizes the importance of and concern about the information in electronic records remaining private and secure.


Microsoft and Google are exploring how they can apply their vast resources-both technological and financial-to reshaping the way consumers get and control health information. Though the companies remain tight-lipped about the specifics of their initiatives, to be announced this fall by Microsoft and next year by Google, both are focusing on allowing users to control how much and what kind of information to include in their PHR, as well as who can access it.


The Robert Wood Johnson Foundation has also taken an interest in the PHR and launched a national initiative, called Project HealthDesign: Rethinking the Power and Potential of Personal Health Records, to encourage innovative design of the next generation of PHRs in a way that will help consumers better manage their health and health care.


Project director Patricia Flatley Brennan, professor of nursing and industrial engineering at the University of Wisconsin-Madison, says only nine of 165 proposals were accepted. "There are a lot of companies experimenting with Web site tools, but we want to develop something more than just being able to connect to the physician's office."


Teams will design applications that address issues relevant to both consumers and clinicians. Prototypes of the health care tools will then be tested with target populations over a 12-month period.


Brennan points out that nurses are involved in about a third of the proposals. "Nurses understand how patients with complex illnesses cope in day-to-day living," she says, "so this is a natural step for nursing. Most Web sites focus on the illness and don't give people the information and tools needed to deal with their condition on a daily basis." A nurse in private medical practice, home health care, and other primary care settings will most likely be the go-to person for patients needing help completing their PHRs.


The loss of medical records as a result of Katrina led to a project called KatrinaHealth, which developed electronic health records for displaced Gulf Coast residents so they could get the prescription medications they needed. (See for more information.) KatrinaHealth has generated interest among private and government organizations in offering PHRs to their clients.


According to Endsley and colleagues in the May 2006 issue of Family Practice Management, there are more than 60 PHR programs available from private organizations. My HealtheVet is being developed by the Department of Veterans Affairs. The Centers for Medicare and Medicaid Services also is investigating the idea of creating a universal PHR for Medicare beneficiaries.


Another example is iHealthRecord, a program offered by Medem, Inc., which was founded by the AMA and six other medical societies. Approximately 50,000 physicians use one or more of the iHealthRecord services, says Jason Best, vice president of marketing for iHealthRecord. More than 70,000 consumers have also acquired a PHR through iHealthRecord since the service became available more than a year and a half ago.


"The interest has grown tremendously and we spend a lot of time working with physician groups and health [insurance] plans," says Best. "Involving physicians and nurses is the key to getting patients to adopt this sort of technology."


Realizing that concerns over privacy may be the key to whether people will embrace the PHR, Congress asked the Government Accountability Office (GAO) to evaluate how health information will be protected in a national electronic health information program. In January the GAO reported that while efforts are being made by the Department of Health and Human Services (DHHS) to protect personal health information, "much work remains" and the DHHS still lacks a comprehensive strategy. The report recommended "that [the DHHS] define and implement a comprehensive privacy approach that includes milestones for integration, identifies the entity responsible for integrating the outcomes of its privacy-related initiatives, addresses key privacy principles, and ensures that challenges are addressed in order to meet the department's objective to protect the privacy of health information exchanged within a nationwide health information network." A summary of the report is available at


Roxanne Nelson, BSN, RN