You break up with your girlfriend, blow an exam, start drinking every night, then come to your senses: Your friends are right – you’re depressed and should see the campus shrink.
But you’re freaked: Can the records of a few sessions with a college counselor today come back to haunt you years from now, like when you’ve just been nominated partner in a law firm?
You’re madly in love with your boyfriend. In fact, you want to marry him. But your birth control suddenly failed, so you drop in for a pregnancy test at the health service. The good news – it’s negative – is scrawled into your medical record.
You panic anew: Will there be a co-payment charge for the test on your term bill, which goes to your parents? Worse yet, could the record of your love troubles someday wind up in the wrong hands, like when you’ve decided to go for the big CEO job?
Chances are, if you’re like most students at this time of year, you’re young, strong, healthy and a lot more concerned about fitting Michelangelo and Music 1 into your schedule than something as seemingly arcane as medical confidentiality.
But maybe confidentiality should be a required course for one rather troubling reason: The rules are changing so fast that the privacy of your student medical records could end before your education does.
That, at least, is the worst-case scenario of privacy advocates who say college students may have even more to fear than the rest of us from the growing centralization and computerization of medical records, and from new laws that could undermine confidentiality for decades to come.
For one thing, you have more years of life ahead in which troubling tidbits in your record can lurk in cyberspace for employers or insurers to find. For another, you’re still learning your way around the medical system and experimenting with sex and relationships that can trigger medical visits.
But before you skip your next medical visit or decide not to tell the doctor about something important – which most emphatically is NOT the take-home message here – let’s be clear.
Many colleges do a good job with confidentiality. And there are things you can do to create your own safeguards.
Some colleges, Harvard and Wellesley to name but two, have written confidentiality policies – which you should read – that explicitly put privacy front and center, with few exceptions.
At Wellesley, for instance, “no records are released without a student’s consent unless it’s a life or death matter or unless it’s required for insurance, or the chart were subpoenaed,” says Dr. Charlotte Sanner, director of the health services.
And on-campus counseling records are “kept separate and locked up,” adds Robin Cook-Nobles, Wellesley’s counseling service director.
Other schools, like Smith and UMass/Amherst, are so concerned about privacy they offer anonymous (not just confidential) AIDS testing, which means test results don’t even go in your record. Harvard and Tufts are considering adopting similar policies.
Some argue that colleges are more sensitized to confidentiality issues than institutions in the “real world” because they’ve spent years walking the tightrope between the rights of students – who are legally adults at age 18 – and the concerns of parents, who worry about their not-quite-independent offspring – and still pay the bills.
‘Simplification’ mandated
But across the country, the privacy of medical records in general is under attack because of a series of bills recently passed or now under debate in Congress.
Just a few weeks ago, for instance, Congress passed the Kennedy-Kassebaum bill which ensures portability of benefits from job to job, but mandates “administrative simplification.”
This sets in motion a process that could give every patient a unique “identifier” like a Social Security number and create a national computer network to allow health care companies to pass records among themselves. Privacy advocates are lobbying for safeguards – like patient consent before information goes into computer data banks – but so far, with little success.
In theory, a national, cradle-to-grave database could be a boon for research, save health care costs and maybe even save your life if, say, you got sick in California and your medical records from Harvard were just a click of the mouse away.
But lifelong medical records easily accessible by computer is “a dreadful prospect,” says Beverly Woodward, a Brandeis University philosopher and privacy specialist. The new system, she wrote in a recent Washington Post op-ed piece, “will make it virtually impossible to obtain confidential medical care.”
And nowhere is the threat more worrisome than on campuses.
“It used to be that college students’ biggest worry might be if their parents were to find out some medical information, says Dr. Denise Nagel, a Lexington psychiatrist who is now president of the National Coalition for Patient Rights.
“But now the much more real danger is that the information will be available to a future employer or insurer. Because of computerization and the changing definition of confidentiality, access to private information is being given to too many people without patient consent,” she says.
“And this is particularly bad for college students because they’re away from home for the first time and most don’t think of the effects on future employers and insurers.”
“This is a big issue for us,” agrees John Roberts, director of the American Civil Liberties Union of Massachusetts, adding, “Things have gotten terrible in the last few weeks.”
Even without the new legislation – including other bills now in the works – medical confidentiality on campus has long been a delicate balancing act, especially if a student is in a life or death situation, or someone thinks he or she is.
Policies vary, but with dicey issues like a pregnancy or eating disorders, the policy at Harvard, for instance, is to respect confidentiality but encourage the student to talk with parents, says Dr. David S. Rosenthal, head of Harvard’s University Health Service.
Ideally, he says, doctors should “work with the student,” asking something like, “Would you like us to call your parents while you’re here?” It often works, he says, because parents like being informed and students may be relieved to have a dilemma presented by a professional.
Harvard also asks parents’ permission for any procedure, like surgery and anesthesia, necessary to save a student’s life, and informs the freshman dean or house master if a student is hospitalized, though the diagnosis is kept secret.
If university doctors feel the student is a serious risk to himself or anyone else, they will also tell parents, Rosenthal says, even if the student has not consented.
Confidentiality is closest to absolute – at Harvard and elsewhere – when it comes to revealing AIDS test results, which by state law can be released only to the adult patient involved.
Many unaware of risks
On many campuses, though, while students are fully aware of their privacy rights with AIDS testing, they are still unaware of the threats to confidentiality from new legislation.
Ariel Nason, 21, a pre-med and nutrition major at UMass/Amherst, worries that as students learn about these threats, they “may feel they can’t be open and honest. . . “I’m scared that people wouldn’t tell their doctors everything because of this.”
Tufts political science major Andi Friedman, 20, agrees, adding that her generation has “grown up knowing how easy it is to find information about things. It seems very little is truly confidential.”
In fact, the prospect of a national, computerized health data system to which numerous people have access sounds “terribly Orwellian” to Tufts junior Joel LaVangia, 20.
“I could get worked up about that,” he says, “maybe carry a sign or two.”
The solution, says Lexington psychiatrist Nagel, is not to shy away from care but to make sure health professionals know how concerned you are about confidentiality and ask their help.
After all, she says, “It’s no longer just the fear that your parents might find something out. It’s your whole future – employment and insurance.”
Brandeis philosopher Woodward agrees.
“Sometimes I thank my lucky stars I’m as old as I am, ” she adds. “If I were a student, I’d be extremely cautious.” Judy Foreman is a member of the Globe staff. Her E-mail address, via Internet is: foreman(AT SIGN SYMBOL)globe.com
A student’s guide to Greater Boston’s colleges, entertainment, employment, apartments, and more, is available on Globe Online at http://www.boston.com. The keyword is: On Campus.
Other sources for this column: Harvard University, and Kathleen Dias, patient advocate; Tufts University, Bobbie Knabel, dean of students, and Michelle Bowdler, director of health services; UMass/Amherst, Bernette Melby, director of health services.
Also, Mass. Department of Public Health, Mindy Mazur, assistant director of HIV counselling, testing and client services, and Carl Rosenfield, deputy general counsel at the state Department of Public Health; Colin J. Zick, a lawyer at Foley, Hoag & Eliot who specializes in health care and confidentiality.
Confidential tips
Privacy advocates, lawyers, university health officials and others suggest the following tips for college students concerned about the confidentiality of medical and psychiatric records.
- Know what kind of health insurance you have and read the section on confidentiality. Ask health care professionals how your personal information will be handled.
- In particular, ask under what circumstances your records would be revealed, and to whom. If you’re also covered by your parents’ insurance, find out if they signed a waiver allowing release of confidential information that may apply to you, too.
- Ask what services, including lab tests, might show up on your regular term bill, and who gets copies of it. If you have a test for something sensitive – pregnancy, say, or a sexually transmitted disease – consider paying for it yourself so nothing shows up on your term bill or your insurer’s records.
- Or, consider a do-it-yourself pregnancy test. If it’s positive, though, you should seek medical care.
- Ask where records are stored and who has access to them.
- If you’ve signed a waiver in advance to release confidential information under certain conditions, ask to be informed every time information is released.
- An up-to-date copy of your records, read them, and ask for changes if you find anything untrue or worrisome. If you’re worried about a particular office visit, negotiate with the school to have that part of the record stored separately so it is not released if an employer or insurer asks for your record.
- Find out if counseling records are merged with medical records and ask to have yours kept separate. With on-campus counseling, ask if information is ever divulged to school officials.
- If you discuss issues like sexual orientation with your caregiver, ask if it’s necessary to put this in your record.
- Ask if your medical and/or psychiatric records are computerized; if there’s a choice, ask that they not be.
- For AIDS testing, consider anonymous, not just confidential, testing and go off campus if necessary. The state Department of Public Health has a list of AIDS test sites (1-800-750-2016). But many college students are actually at low risk, so state officials urge you not to use this program needlessly.
- Use cau Law Institute, 617-867-7881 (for AIDS-related issues).
Also the American Civil Liberties Union of Massachusetts, 617-482-3170 may be of assistance.