Research, confidentiality clash on the Internet
Is medical information public or private?
Medical alert for doctors: With your unwitting knowledge, your patient and his or her family members could be subject to an infection that potentially can destroy the right to privacy and trust that you have built in the doctor- patient relationship.
Cyberspace is filled with medical information on patients and in many respects the sharing of information has distinct advantages. It also raises serious ethical concerns.
Take just two examples of this quandary. In the past, autopsies generally were conducted only when a patient died of "unnatural causes." But now researchers are looking toward autopsies to find clues to the disease process and toward the World Wide Web to help them compile data on death.
Can patients actually be "harmed" after death if confidentiality about how they died is breached? Congress says "yes," while researchers argue that restricting access to medical information such as mortality data will seriously imperil efforts to find disease cures.
"This presents two seemingly opposing paradigms," says Jules J. Berman, PhD, MD, a pathologist at the Veterans Affairs Maryland Health Care System in Baltimore, and developer of the Internet Autopsy Database (IAD). The database is hosted by Johns Hopkins University’s department of pathology, also in Baltimore. The Web site became available in November 1995 and currently includes an autopsy fact sheet for nearly 50,000 patients from 12 academic medical centers across the United States.
Each fact sheet includes demographic information, individual medical terms, body sites, disease names, and other modifiers. It also includes information on the pathological findings from the autopsy report.
The medical institution that supplies the autopsy report also archives patient tissue taken during the pathology exam. It is this tissue, and its inherent genetic information, that may lead researchers to a diagnosis for a rare disease. It might also lead, theoretically, to the release of totally private information about a patient after his or death.
The majority of these autopsy reports (16,425) are for children who died before age 9, and another 1,839 are for patients ages 9 to 19 at death.
This database varies sharply with legislation introduced last year in the U.S. Senate that explicitly forbids the collection and analysis of genetic information on anyone under 18 years of age unless that information "will prevent or delay the onset or ameliorate the severity of the disease" and the parent or guardian has executed written authorization. (See story on draft legislation and two Congressional hearings held in 1996 on confidentiality of medical records, p. 10.)
"The difference with this legislation and many other draft bills is that it attempts to rectify at least 10 real problems with genetic privacy that have already occurred," says Roger Elliot, a staff person on the Senate Committee on Labor and Human Resources. "This measure is not trying to ward off problems that may occur, but respond to circumstances that have already violated citizens’ right to privacy," he says. The measure has wide bipartisan support and will undoubtedly come up for debate again in 1997, he says.
Berman says the IAD is the first database composed of confidential patient-related medical data made available for public examination. He maintains the database is critical to medical research and that patient privacy can be protected by doubly encoding autopsy information, omitting the date of the autopsy and the patient’s age, and increasing the number of fact sheets in the database.
The pathologist’s cautious optimism is shared by other physicians who are both encouraged and concerned about patient information on the Internet.
Patients tell all to their computer
Shared database information on patients is not limited to autopsy reports. In the age of managed care, increasing emphasis has been placed on patient outcomes. One highly regarded study, the Medical Outcome Study (MOS), based at New England Medical Center (NEMC) in Boston, has sought to measure health outcomes from a patient’s perspective and is being used in a number of outcome studies both nationally and internationally.
The SF-36, developed and refined by researchers over the past decade, is a simple survey of 36 questions that can be filled out by an adult patient in five to 10 minutes at home or while waiting to see the physician.
Recently, researchers from University of California at Los Angeles (UCLA) used the SF-36 in a pilot program on the Internet. Close to 5,000 participants entered answers to the questions and received scores using the protocol established by the World Wide Web for the survey.
Responses were intended to be anonymous but some participants added personal information such as prior medical history, their profession, job title, and other information that was easily identifiable, says Douglas S. Bell, MD, a physician in the division of general internal medicine at UCLA who conducted the study. "Some Web users are eager to discuss their illness and make themselves quite vulnerable to privacy loss," says Bell.
Bell explains that insurance companies can legally use information obtained on the Internet. Some [managed care] companies are analyzing this public access information to determine categories of patients who are "cheaper to treat" and then denying coverage to others, says John E. Ware Jr., PhD, a senior scientist with the Health Institute at NEMC, and principal investigator of the Medical Outcome Study.
Ware says that many independent researchers have put the SF-36 on the Internet, but that the reliability and quality of the surveys varies tremendously. He notes, for instance, that the SF-36 itself does not have a space for additional information and would not afford patients the ability to give personal information.
"The abuse potential for this information is tremendous," says Ware. The developer of the survey also cautions that Web site users are not a representative sampling of patients. "Health care needs are not distributed randomly. I would want to see certain groups, such as Medicaid and Medicare populations and ethnic minorities, carefully monitored. The objective [of MOS] is to improve the [health care] system to meet the needs of groups like these so that we can contain costs without sacrificing their health," he says.
Ware says that physicians should advise patients about the potential benefit and harm of using the Internet to obtain medical information. "Make sure this isn’t a substitute for the kind of communication that needs to take place between the doctor and patient," he says. Eventually, sharing this type of information electronically will "revolutionize our ability to change the health care delivery system." But, for those concerned with the ethical pitfalls, Ware says "we must confront and deal with the abuses."
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