It's five in the morning. You're in a hotel room having a serious allergic reaction to something you ate. Do you know where your medical records are?
If you're like most Americans, they're resting peacefully in a manila folder at your doctor's office. And the writing inside looks something like Sanskrit.
Someday, that information could be only a modem away--or closer, perhaps in a keychain drive in your luggage. The Bush administration has released a strategic plan for every U.S. citizen's health information to be stored in an "electronic health record" central database within ten years. Each person would have a "personal health record," an electronic file the individual would manage, that could exchange information with the EHR database.
The PHR would contain information on a person's insurance plan, prescriptions, allergies, medical history, and conditions such as asthma or diabetes.
"If you showed up unconscious at an emergency room in the middle of the night in some other city, your PHR might allow the doctors there to access the information they need to help you," says Donald Mon, vice president of practice leadership for the American Health Information Management Association.
The Department of Health and Human Services released the strategy several weeks ago, but provided no specific implementation plans. However, the agency is paying close attention to collaborations among providers, patient groups, insurers, and private technology companies to define common standards for PHRs. The idea has been suggested in previous years, but advocates say today the technology exists to ensure both security and access.
Privacy organizations are a key participant in creation of the standards--a factor crucial to the PHR's ultimate success, says Emily Stewart, policy analyst for the New York-based Health Privacy Project.
"It's all about gaining the public's trust," Stewart says. "An electronic information system won't work if the public doesn't have confidence and trust in it. If consumers are concerned about it, they won't participate."
Some Web sites already offer electronic health data storage.
Online, password-protected storage of health data is already available. Companies offering the service range include the independent Followme.com. Others, such as CapMed, are marketing a "Personal HealthKey," a keychain storage device that inserts into a USB port and contains a person's medical records. Still other products use flash drives and smart cards (similar to an ATM card) to store personal health data.
Consumer Choice Urged
A telephone survey conducted this year by the Markle Foundation, which promotes the use of technology to solve health-care problems, found that 72 percent of the respondents agreed to some extent with the statement "I want to be involved in medical decisions that affect me. Having my own medical record would help me make better decisions."
The PHR may empower the consumer and increase access to health data--but where access increases, security sometimes suffers.
"There are huge privacy concerns," says AHIMA's Mon. "We hear about the Internet getting hacked all the time. This raises questions like, 'Will my health information get hacked?' or 'Could someone find confidential information about me?'"
The choice of media to store the PHR will depend on the privacy concerns of the consumer, says David Lansky, president of the Foundation for Accountability, a consumer health advocacy group that works with the Markle Foundation.
"It shouldn't be one-size-fits-all," Lansky says. "Younger people might prefer to keep their PHR online, while others might be concerned about identity theft or hacking and will carry their data on a USB key in their pocket. Medicare members, who are older, might feel more comfortable carrying a paper copy of their records."
Privacy concerns have stifled large-scale adoption of a PHR to date, says Todd Glass, Markle Foundation public affairs director.
"Privacy has been a real stumbling block for the past 20 years. In the past people thought personal health records would have to be stored on a huge centralized database, or that everybody would have to have a unique national ID," Glass says.
But new technology has produced better options to ensure the security of health data. Security software has improved in response to the dramatic rise in cybercrime in recent years. Some PHR ideas now propose using portable media smart cards or USB keys to store health data, removing the data from the network entirely.
The PHR concept itself is just now beginning to develop among health-care IT vendors, Glass says, and the set of health data each product contains varies from one to another.
The stakes are higher than just consumer convenience. If consumers embrace the PHR, the end result may be better health care, supporters say.
Statistics show that almost all paper medical records kept by health-care providers contain incomplete information, omissions, and errors. The medical malpractice insurance industry has shown repeatedly that poor health data is a leading cause of injuries to patients. The Department of Health and Human Services believes that more consumer involvement in the management of the data might result in more complete and correct information.
AHIMA's Mon believes both patients and caregivers can benefit when information is shared between the medical professionals' EHR and the consumers' PHR.
"Your doctor can upload information to your PHR after your appointment, and if anything has changed before the next time you go, he can just access it from your PHR with your permission," Mon says.
The Health Privacy Project offers these privacy tips for health consumers:
- Learn about the medical privacy protection in your state.
- Request a copy of your medical record.
- Request a copy (available by snail mail only) of your file from the Medical Information Bureau.
- Talk about confidentiality concerns with your doctor.
- Read authorization forms before signing, and edit them to limit the sharing of information.
- Register objections to disclosures that you consider inappropriate.
- Be cautious when providing personal medical information for surveys, health screenings, and health-related Web sites.
- Educate yourself about medical privacy issues.
Due to a reporting error, the MerckSource.com site was described incorrectly as offering electronic storage of health records; it does not. The text has been changed to reflect this correction.