Americans make more than 119 million visits a year to hospital emergency departments (EDs).1At least 21.7 million of these (18.2%) involve a patient with a chronic disease (Table 1). Optimal care of chronic disease patients requires knowledge of the patient's underlying health problems, medications, allergies, and prior care.2 In emergencies, health care providers frequently lack access to this information.Reference Musgrove3 This is particularly likely when a patient is traveling far from home, when their primary care provider does not use electronic health records, or a patient's ambulance is diverted from their hospital of choice to an alternate facility.Reference Burt, McCaig and Valverde4 If the patient is unaccompanied and physically incapable of communicating, the emergency department (ED) staff may be unable to secure even rudimentary information. This can have grave consequences. Forty percent of the elderly patients in the US take five or more medicines,Reference Kaufman, Kelly, Rosenberg, Anderson and Mitchell5 and half of serious medication errors occur because the physician lacks information about the patient or the drug.Reference Bates and Gawande6 These challenges are magnified in disasters.Reference Aldrich and Benson7Reference Ford, Mokdad and Link8
Emergency Department Visits by Patients With Chronic Disease: United States, 2006
To minimize the potential for error, a number of patients carry a personal health record or PHR. A PHR is physical device or electronic application that contains an abridged version of the patient's health information.Reference Wen, Kreps, Zhu and Miller9 Unlike many health records, PHRs are managed by the patient rather than the health care provider. The data may be stored in a stand-alone device, such as a wallet card, or it may be tethered to a web database or call center. Some PHRs are designed to be integrated into their hospital or health care provider's electronic health record (EHR), but most are not.Reference Tang, Ash, Bates, Overhage and Sands10
Interest in PHRs is growing; a recent national survey revealed that 79% of US consumers feel that an electronic PHR would help them manage their health and use of health services.11 However, no one has surveyed the marketplace of commercially available PHRs. We undertook this study to describe the characteristics, advantages, disadvantages, and cost of consumer products designed to convey personal health information in emergencies.
METHODS
To mirror the search strategy a consumer might use, two of us (Potini and Weerasuriya) employed the search engine Google® to identify candidate vendors. The following search terms were used: “personal,” “online,” “card,” “bracelet,” “flash drive,” “medical,” “medicine,” “emergency,” “health,” and “record.” Because nearly three-fourths of Internet users examine only the first page of a typical Web search,Reference Jansen and Spink12 we limited our survey to the first two pages of each search. We supplemented our on-line searches with print ads from AARP: The Magazine. Products focused on a single disease, such as diabetes, and those limited to the membership of a health system or plan were excluded.
Our search identified 45 candidate companies and organizations. To avoid duplicate entries, we consolidated products sold by a single vendor. A structured questionnaire was used to ensure consistent data collection (see online Appendix). In many instances, the only available information was posted on the company's web site. If a print brochure was offered, we downloaded it or requested a copy be mailed. When it was possible to contact a sales representative, both surveyors identified themselves as a medical student shopping for a parent with a chronic disease. If the salesperson's statements conflicted with the company's web site or printed material, we recorded the most favorable claim. Because several vendors support multiple platforms, we categorized each company's offering based on whether it is a stand-alone or tethered product. For example, if a vendor uses engraved jewelry or a wallet card to direct health care providers to a web site or a national call center, we categorized them as a “web-based” or “call center” company, respectively.
Our study was based on publicly available information. Because we did not ask salespeople any personal questions, our institutional review board determined that it was exempt from review.
RESULTS
All web searches were performed in October 2008. Follow-up surveys were completed over the subsequent 5 weeks. Each surveyor assessed an overlapping two-thirds sample of vendors; perfect interrater agreement was achieved. Quoted prices did not differ by more than 50 cents. Ultimately, we located 39 unique vendors that offer PHRs to the general public (Table 2). All employ one or more of five media: engraved jewelry, a printed identification (ID) card or pamphlet, a universal serial bus (USB) drive, a web database, or a toll-free national call center.
Inventory of Personal Health Information Technology Companies
Engraved Jewelry
Eight vendors sell engraved bracelets, watches and/or necklaces that provide enough space to list the owner's medical problem(s) and perhaps a few medications. Typically, the jewelry displays some sort of symbol, such as a star of life, to alert healthcare providers to its purpose. Because medical jewelry is worn by the owner, access is controlled. Consumers incur a one-time cost of between $10 and $485, depending on the item's intrinsic value. Once an item is engraved, there is no way to update it. If lost, it must be replaced.
Wallet Cards
Three vendors sell an embossed card or pamphlet that summarizes the owner's medical problem(s), allergies, medications, and other information. Typically, data are transcribed by the patient, so the medium is only as accurate as the patient's knowledge of his or her illnesses. Wallet cards typically sport some sort of insignia that declares their purpose. Access is controlled by the owner. Prices range from $4 to $50. Once printed or embossed, a card cannot be updated. If lost, it must be replaced.
USB Drives
Twelve vendors sell USB flash drives that allow the owner to store large amounts of personal health information. They are typically worn as a pendant, but may be carried on a keychain. USB drives permit regular updating of data, but vendors generally require the owner to do it. Some companies provide pre-loaded software to guide the owner through this process. Prices range from $16 to $90. Some (but not all) can be backed up on a personal computer. If a drive cannot be backed up, any data stored on it must be manually reentered if it is lost, stolen, or damaged. Some drives are password protected; others are not. Password protection offers a measure of security but can thwart efforts to access the data in an emergency.
Web-based Data
Eleven vendors support web-based databases. Like USB drives, a web database offers extensive storage capacity and can be easily updated. Some computer literacy is required to create and update such a PHR. Most of these web sites are patient controlled, but a few offer to organize the client's information over the telephone or via a faxed form. To retrieve data, a health care provider must have web access, the site's Uniform Resource Locator (URL), and the patient's user name and password. To guide health care providers to the site, many vendors inscribe this information on a special bracelet or embossed card. Most web-based services charge a one-time initiation fee, plus an annual subscription fee of $30 to $200.
Call Centers
Five vendors support 24-hour call centers and toll-free numbers. Access is protected by a patient-specific code number that is engraved on an item of jewelry or embossed on a card. Call centers allow health care providers to access the patient's PHR without a computer. Initiation fees range from $20 to $400. Annual subscription fees range from $20 to $200.
Vendors by class and contact information are displayed in Table 2. Specific features of their products are summarized in the online Table.
DISCUSSION
In an emergency or disaster, emergency care providers need access to patients' health information to provide optimal care. Too often, this information is lacking. Electronic health records (EHRs) are useful when available, but EHR implementation is slow.Reference Blumenthal13 Currently, 46% of private physician offices in the United States use EHRs, compared to 96% in the United Kingdom, 97% in New Zealand, and 99% in the Netherlands.Reference McCarthy, How, Fryer, Readley and Schoen14 Hospitals aren't doing much better. A 2010 survey of hospital-based emergency departments in the United States determined that only 2% have fully functional EHRs; 12% have a basic system and 32% have EHRs at other levels. More than half have none.Reference Landman, Bernstein, Hsiao and Desai15 Ironically, many hospitals that support EHRs limit access to physicians in their network.Reference Grossman, Kushner and November16
The challenge of accessing personal health information is dramatically amplified in a disaster. When Hurricane Katrina flooded New Orleans, the medical records of Charity Hospital and many health care facilities in the area were severely damaged or destroyed. As a result, thousands of evacuees lacked information about their chronic health conditions, medications, and prior care.Reference Brodie, Weltzien, Altman, Blendon and Benson17Reference Cefalu, Smith, Blonde and Fonseca18Reference Gray and Hebert19Reference Sharma, Weiss and Young20
Four out of five US consumers are interested in acquiring an electronic PHR, but only 2.7% have one.11 We noted wide variability in the types of PHRs offered, their features, and associated costs. Not surprisingly, USB and web-based companies provide more storage capacity and overwriting capability than fixed media such as medical jewelry or a wallet card. But to access these data, a health care provider must have a smartphone or a computer with an active USB port, Internet access, and a web browser with 128-bit encryption. In many EDs, computer workstations are locked down by deactivating all external data ports to prevent contamination of the computer with viruses and worms. In these instances, hospital staff members would be unable to read the patient's USB drive.
In a disaster, it is important for rescuers to have ready access to a victim's essential health information. Medical jewelry and wallet cards have enough storage capacity to list important medications, allergies, and perhaps one or more health conditions. Because they are physically durable, they are more likely than a USB drive to withstand water, heat, and other harsh environmental conditions. Web sites and call centers are durable, but rescuers may have limited ability to reach them, particularly in the first days of a disaster. If huge numbers of people are affected, it may be difficult for call center to handle the volume of traffic.
Our findings are offered with five caveats:
1. Because we lacked the resources to independently verify vendor claims, we accepted them at face value.
2. Our data were collected in 2008. Since then, it is likely that additional vendors have entered or exited the market. Specific features and pricing may have changed somewhat as well. Our study is not intended to serve as a comprehensive guide.
3. Our survey is extensive, but not exhaustive. We employed a single search engine, and limited our survey to the first two pages of each web search. Even though this is the approach taken by most consumers, it is possible that we missed some important vendors.
4. Some health care systems, advocacy groups, and private health plans offer PHRs to their members. Their products are subject to the same issues as those we studied.
5. We did not survey health care providers to assess what elements of PHRs they consider essential, how often they encounter them in practice, and whether or not they have the requisite technology to access a patient's data in an emergency. Also, we do not know how often providers overlook or ignore these products because they fail to grasp their value.Reference Rozovsky and Rozovsky21 These questions are fruitful avenues for future research.
CONCLUSION
Until fully interoperable electronic health recordsReference Kahn, Aulakh and Bosworth22 are a reality, patients who wish to maintain their own PHR have a wide range of products and services from which to choose. Each has advantages and disadvantages. Providers should be aware of these products, so they can access the information they contain in an emergency or a disaster.
Author Disclosures: Vishnu Potini and Dilani Weerasuriya participated in the design and acquisition of data, analysis and interpretation of the data, drafting of the manuscript, critical revision of the manuscript, and provided administrative support. Douglas Lowery-North and Arthur Kellermann had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. None of the investigators has potential conflicts of interest to declare, including specific financial interests and relationships and affiliations relevant to the subject matter or materials discussed in this manuscript.
