Is Big Brother at Medicine's Frontier?
INFORMATION ACCESS vs. PATIENT RIGHTS
By APRIL THOMPSON
New technologies and methods of documenting health information are ushering in radically new changes to the system of healthcare, but they also are stimulating many questions: Who has a right to see a patient's record, and who should control and maintain the information? Where does a physician's judgment begin and a patient's rights end?
"We are at the beginning of a major revolution in healthcare. There has never been such a substantial jump forward in medicine as what we have now," said Peter Waegemann, executive director of the Medical Records Institute, an applied research and information clearinghouse based in Newton, Mass.
INEFFICIENT INFORMATION FLOW
The nation's current healthcare system suffers from an inefficient and insufficient flow of information, said Waegemann. "What we know from databases and from what the patient is telling us is very little. Out of that, we are trying to develop a care plan for the patient. This is practicing medicine blindly," he stated.
Documentation of patients' medical status is still far better in the United States than in most European countries, Waegemann said. In England, for example, it usually takes 8 to 12 weeks before a general practitioner is informed about what has happened during a patient's hospital stay.
In the future the professional caregiver will be more of a facilitator, working with many specialists and using knowledge stored in databases, with years or maybe decades of patient information available within seconds, said Waegemann. Internationally, he added, "this idea is still in its infancy. Physicians are still being trained to be Lone Rangers."
In the future, he explained, rather than a physician keeping a patient's central file, the health insurance plan or a physician group may collect and maintain the information. A number of large physician groups are already doing this, he said.
'THE EXCHANGE'
The Physicians Information Exchange (PIE), a doctor-owned company, has developed a computerized system called the Exchange, which facilitates the transfer of medical records between a patient's doctors on the patient's authorization. A particular patient's healthcare information remains at the medical practitioner's office and can be retrieved with a password known only to the physician.
Groups like PIE will not only handle medical information but also will explain it to patients when appropriate. Waegemann asserted that this represents a "change from healthcare in the past, where the doctor is a father or God figure, to a point where the patient is a partner."
Although medicine as currently practiced relies heavily on the memory of the individual physician, Waegemann claims that future healthcare professionals will draw from a common store of knowledge to diagnose patients. PIE, for example, is developing the Knowledge Bank, which will hold extensive information related to clinical procedures, treatment therapies, outcomes, costs and benchmarks for diagnosis.
PIE also is developing a national medical database to enable doctors across the country to retrieve aggregated clinical and cost data while ensuring patient confidentiality. "Right now if you want to do research, it's usually--at best--using data on a couple of hundred patients. In most cases it's less. It's cumbersome to get the paper records and extract comparable data out of them," Waegemann noted.
INADEQUATELY PROTECTED
In the U.S., healthcare information is inadequately protected, he asserted, citing as examples loosely guarded computer systems and databases, physicians' use of cellular phones, and unprotected information on the Internet.
The Kassebaum-Kennedy healthcare reform act should substantially improve this situation, according to Waegemann. This law, officially called the Health Care Portability and Accountability Act of 1996, requires Congress to enact confidentiality legislation by August 1999. Several proposals currently in Congress would grant patients full access to their medical records. Until recently, this was not possible under the laws of most states. The proposed legislation also makes breach of confidentiality a major offense, with a minimum one-year sentence for the misuse of health information.
Laws and regulations related to patient privacy are much stricter in countries such as Canada, South Africa, Germany, Austria and France and those in Scandinavia, Waegemann said. In many nations, such as Sweden, doctors can exchange only minimal information about a patient. In Finland, no home health agency can enter information in the computer without the patient's consent. "In Europe, there is much concern about privacy, and no trust in the system," he said.
In contrast, a PIE survey found that 69% of Americans favor having their medical information controlled by doctors, rather than by the federal government (13%), insurance companies (7%) or employers (4%). More than two-thirds of respondents expressed willingness to share medical information for the public benefit as long as they are not identified.
A Clinton Administration proposal to broaden law enforcement's access to private medical records has drawn fire from a number of medical organizations. "As guardians of patients' trust, hospitals and health systems are deeply troubled by this," Dick Davidson, president of the American Hospital Association, wrote last year to Health and Human Services Secretary Donna Shalala.
MANDATED HEALTH
As patients gain control over their medical care, they face increasing societal pressures to maintain their own health, Waegemann observed. Our society is slowly moving toward mandating health, he said, noting the recent flurry of anti-smoking legislation in public places. He added that some experts have predicted an Orwellian future in which, for example, overweight people will be punished in the workplace or forced to pay higher insurance premiums.
In some ways, the future of healthcare--an impersonal system where "virtual doctors" examine and treat patients through high-tech equipment and television monitors hooked up to patients' homes--is already here. Waegemann said that at least 25 trial projects are exploring unorthodox methods of healthcare delivery and that many of them would limit patient care--or at least the monitoring of a patient--to a television visit.
A French study of monitoring devices requires patients to indicate they have taken their medication by pressing a button on their televisions. In Japan and Australia, devices are being tested that turn toilets into home laboratories for monitoring a patient's health. Also, starting next year, electronic prescribing systems will allow U.S. physicians to submit prescriptions to the pharmacy instantly by pressing a button.
Such experiments are partly a result of cost pressures that force healthcare providers to be more efficient in their delivery of services. "The economics are tremendous--one physician can visit 100 patients during one day," Waegemann said.
Patients in the U.S. have expressed mixed feelings about virtual healthcare visits. Although home-bound patients claim to look forward to this 15-minute television interaction, "telemedicine" hasn't been as successful as was expected, Waegemann said. "In some ways it may sound like George Orwell's 1984, but we have to focus on the positive side. We don't want this to infringe on the patient's privacy; we really want to help the patient."
The Physicians Information Exchange can be reached at 1401 Hudson Lane, Suite 202, Monroe, LA 71201; (318) 323-5000; fax (318) 323-3688; www.piexchange.com.
For information on the Medical Records Institute, contact Peter Waegemann, MRI, 567 Walnut St., P.O. Box 600770, Newton, MA 02160; (617) 964-3923; fax (617) 964-3926.
April Thompson, former Aging Today assistant editor, is a travel writer on a round-the-world tour throughout 1998.
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