Will your medical records be available if you end up in the emergency room after a car accident or heart attack?
Probably not in time to help save your life, thanks to the current archaic system of paper records.
The federal government announced ambitious plans to create a vast new information system for patients and to provide incentives for physicians to adopt electronic records. Electronic medical records can not only improve the quality of care by giving patients and their doctors a complete, up-to-date view of a patient's medical history, medications and allergies but also could help reduce medical errors. But, with unresolved questions such as who will pay for new technology and how information will be shared, it may be years before your local doctor or hospital gets wired.
In the meantime, a number of new tools and services are making it possible for consumers to create, store and share their own medical records. These range from emergency wallet cards that can be printed off the Web to portable gadgets that store a family's entire medical history on a microchip and cost less than a new iPod. A growing number of health plans are also offering special Web sites with free medical record-keeping tools for members, which could be particularly useful for people with chronic conditions like diabetes who need to diligently track measures such as blood-sugar levels.
The idea is to put together records that patients control and manage themselves, collecting data from different providers and sharing it as they see fit. Consumers surveyed by the group Connecting for Health became receptive to the idea of electronic medical records after viewing an ad showing a man falling from a ladder with the caption "You have three seconds to remember every doctor you've ever seen, every procedure you've ever undergone and every medicine you've ever taken." In addition to recording vital information such as next-of-kin contacts and lists of allergies, patients could use the records to track their own immunizations and note any mistakes in their doctor's records.
Cynthia Solomon, a Sonoma, Calif., mother, saw the benefits of personal medical records in electronic form after 20 years of compiling paper files for her 28-year-old son, who has hydrocephalus, a condition that leads to abnormal accumulation of fluid in the brain. After he landed in an unfamiliar hospital's emergency room with no access to his medical history or past brain scans, Ms. Solomon took out a second mortgage on her home and hired some programmers to develop an online medical record that users can program themselves and provide to any doctor that treats them. A subscription to the site, Followme.com, costs $35 for an individual and $75 for a family.
"Medical practices close, hospitals consolidate, and physical records can be easily lost," says Ms. Solomon. "But you need to have your information available in an emergency and to coordinate your care, and the technology to do so is here and easily affordable."
It isn't just the chronically ill who could benefit from keeping their own medical records. "We are all at risk if we don't collect and manage our own health information," says Marie Savard, a physician who developed a binder of paper folders several years ago to help patients keep a set of medical records, including an emergency wallet card with information such as next-of-kin contacts and prescription-drug lists. Dr. Savard has since licensed her system to Merck, which lets consumers download and print 26 different forms for free on its mercksource.com Web site, including childhood and adult vaccination forms and a sample letter to request records. (By law, doctors must provide patients with copies of records that they ask for, though there may be a fee.)
Bio-Imaging Technologies Inc.'s CapMed unit, which designed one of the first software programs to let consumers manage their own medical records, now offers a CD-ROM disk and a portable "personal health key" that lets users manage and store personal health information and link to resources via the Web. The health key is a memory device that's small enough to put on a key chain and can plug into any computer's USB port. Though most of the data are accessible only with a password, users can choose information that they want to be accessible in an emergency; that information will automatically appear when the key is inserted into a USB port.
Wendy Angst, general manager of CapMed, likens it to a medical version of the widely used "Quicken" financial-management software program. About 400,000 personal-health records have been distributed to consumers through health plans, but the disks and portable devices can be purchased from www.capmed.com for $30 to $79.95, depending on the amount of information patients want to store. Another USB-compatible device, Med-InfoChip, developed by Carl Franzblau, an associate dean at Boston University's School of Medicine, costs $44.95 for a one-user version and $99.95 for a device that holds two medical profiles (www.medinfochip.com).
Web sites that let consumers manage and store their own records include WebMD's Health Manager subscription service (healthmanager.webmd.com), which also offers interactive health-assessment tools and health-management tools for children and sends medical news based on topics of interest to users. Its data are also password-protected, but users can make information available to a doctor or hospital in an emergency. The service is free for six months and then costs $29.95 a year. (As always, it is best to read the privacy policy before entering personal information on any health Web site.)
A matter of record
Patients should keep their own set of records. Here's a list of some essential data that should go into them.
— Medication lists: Prescription drugs, over-the-counter supplements
— Immunizations: Recent vaccinations
— Problem list: Diseases or conditions
— Allergies: Drugs or substances that cause reactions
— Images: X-rays or scans such as mammograms
— Recent test results: Blood tests, Pap smears
— Spiritual affiliation: Religious preference or considerations