The Virtual House Call
A doctor at Boston's Children's Hospital is sending his patients home with video cameras. His idea could renew the doctor-patient relationship. But it could also unleash Big Brother.
By Ellen Barry
APRIL 20, 1998: In the Enders Auditorium, where Children's Hospital holds its grand rounds, the visuals tend toward the diagram and the cross-section. But today, after a bit of adjustment on the part of tech support, the white-coated crowd is watching a little girl with asthma sobbing straight into a video camera.
"Is it because you're too cute?"
"Is it because you're too blond?"
"Why is it?"
"I don't know," she wails.
It's a moving picture in every sense of the term. Doctors in the crowd are conscious that this is the part of their patients' lives they miss in the age of managed care. The clips they are watching are drawn from almost 500 hours' worth of "virtual house calls," in which young patients made films of their environment with the goal of learning more -- and teaching their doctors more -- about why they have asthma.
The question is urgent, because asthma is pandemic in our cities: the death toll has doubled to 5000 a year since the early '80s, and incidence jumped 52 percent between 1982 and 1993. Doctors know that environmental factors -- such as cigarette smoke, mold, and droppings from cockroaches and dust mites -- are part of what's making children sick, so the children were given video cameras and instructed to film the story of their asthma. One kid came back with 78 hours of film.
The home movies, when they came in, contained a wealth of visual information -- rooms full of plants, which are grade-A mold producers; dusty construction sites outside kids' windows -- the kind of things you'd have to visit to see. There's also information that might not come out in an old-style house call: footage of a smoke-filled kitchen; of medication overused or wrongly used; of hostility to doctors and isolation from peers; of a teenage filmmaker announcing to the camera that she has decided to stop taking her medicine, despite telling her doctor otherwise. In one shot, an adult hand holding a cigarette reaches across the lens to turn the camera off. From the podium, watching the doctors watch the tapes, is Dr. Michael Rich.
Rich's project, the Video Intervention/ Prevention Assessment program, or VIA, may change the way doctors treat asthma. But by teaching doctors about the environments and private concerns of sick children, it also has the potential to go much further. "We used this methodology with a relatively tame subject, but we want to apply it to much more controversial issues," Rich says. Video intervention could be used not only to monitor the lives of kids with chronic illnesses such as sickle-cell disease, diabetes, and HIV, but also to achieve "complex medical interventions" in cases that involve substance abuse, teen pregnancy, and violence in the home. It could bring the child's experience to center stage.
But the program also sets off civil-liberties alarm bells, because what makes VIA work so well -- the intimate child's-eye view of domestic life -- is also what makes it dangerous. It's easy to distribute cameras to children, but hard to know what to do with the information that results. What if a tape did show a parent abusing a child or abusing drugs? Doctors are required to report evidence of abuse or neglect to the Department of Social Services (DSS). Videotapes can be subpoenaed. And even when it yields low-octane information, like smoking in the home, intervention could easily raise accusations of surveillance. Videotape, as the world learned from the case of Rodney King, has a power that cannot be entirely predicted.
"I have people who want to run with it in certain directions. They want to perfect this methodology and apply it to their subjects, including sticky social and political [subjects] such as substance abuse and violence," Rich says. "This is one of those projects that can spin off in a lot of ways."
Michael Rich, 44, is a doctor with abundant incidental talents. He studied creative writing in college, then worked for 12 years as an uncredited script doctor -- fine-tuning screenplays for motion pictures he cannot identify in public, but which (trust me) you have seen -- and as a documentary filmmaker. One film he worked on won a prize at Cannes. Then, after what he describes as a "midlife crisis," he enrolled at Harvard Medical School at the age of 31. And he kept his mouth shut.
"When I applied to medical school, I didn't tell anyone about my prior life," Rich says. "I didn't want to seem like a dilettante. I wanted to sink or swim on my own merits."
But the secret came out, and Rich set to work finding applications for film in medicine. What he came up with, eventually, was VIA. As he shepherded his project through grant proposals and review boards, he encountered resistance from doctors who he says were "mostly bench researchers -- they're used to cutting up DNA and running gels. They were saying, 'This is voyeurism, this isn't science.' " Ellen Goodman, a Children's Hospital social worker who collaborated with Rich in the early stages of the project, says his concept challenged doctors' traditional wariness of "soft science."
Rich teamed up with a Temple University anthropologist named Richard Chalfen, who has been having subjects -- inner-city teens, Native Americans on reservations -- film their own environments since the mid-'60s. According to Chalfen, what physicians stand to gain from the tapes is a sense of "disease in context" -- for instance, a better understanding of whether patients actually comply with doctors' instructions. According to Rich's data, for example, 83 percent of VIA participants misused medication during the course of the study. "It's a very upper-middle-class model that patients do what doctors say," Chalfen says. Watching these habits over the long term could provide lessons that go beyond individual cases to color treatment everywhere.
Another interesting result, Rich says, is that the kids apparently benefited simply from the process of filming themselves. Twenty-eight percent said their symptoms had improved while they participated, and 52 percent said they knew more about asthma. And in the hours of simply talking to the camera, with the vague sense that someone would listen eventually ("it worked like a confessional," Rich says), certain subjects regained control over their lives.
The challenge awaiting VIA is not so much collecting information as knowing how exactly to act on it. Although Rich sees video documentation as a tool to "empower the voice of the patient," it could easily turn out otherwise. Will intervention consist of gentle persuasion of the we-still-have-concerns-about-smoking variety, or will it dissolve into finger-pointing? Even if families formally agree to take part in the program, how do you gain consent from other people who walk into the house while a child is filming? And -- given what we already know about patients' saying what doctors want to hear -- how do you keep doctors from pressuring families into participating?
John Roberts of the Massachusetts ACLU sees the idea of video intervention looping back to give doctors a dangerous amount of power.
"This does sweep far beyond what would ever be contained in the medical record -- that is, it's actually surveillance of a family," says Roberts. "If there was violence, the tape would have to be turned over to police, or to the DSS. There's all kinds of possibility there for abuse of family privacy."
Rich counters that such violations would undercut his purposes, because "if [families] felt there was any kind of surveillance going on, they wouldn't give us as good material as they could." Rich's subjects so far have signed multiple release forms and reserved the right to turn off the camera at any time; none dropped out of the study. But Roberts still thinks families could endanger themselves by allowing filming in their homes.
"I think there's a terrible risk that people might take doing this kind of thing," he says. "People sort of take doctors' word for things."
And the fact remains that the doctor's job is to tell people how to behave. When the asthma study's funding runs out in June, Rich hopes to get funding to work with teen parents, investigating how they got to that point and how they live. The ultimate test of VIA will come the day the camera picks up something that the families really don't want their doctor to see. When that issue comes up, we'll know whether the great benefits of access outweigh the tremendous risks.
They're risks we wouldn't take if we, as a society, weren't so desperate for creative means to sustain the relationship between doctors and patients. The old means have stopped working -- and Rich's argument is that technology, which so many see as dehumanizing medicine, can also be used to "rehumanize" it. Because medicine is not likely to rehumanize itself. When Rich presented VIA at grand rounds, one doctor stood up and asked a question that seemed obvious: Given the amount of time it takes to transcribe 500 hours of videotape, wouldn't it make more sense for doctors simply to stop by patients' houses?
Rich agreed heartily, to a spattering of applause, but in an interview later he doesn't seem so sure. First, he reiterates, the camera sees things that the doctor wouldn't see. Second, the age of the house call has passed away forever. Suggesting otherwise, he contends, is nothing but nostalgia.
"No insurance company is going to pay for that," he says. "That's wishful thinking."
Ellen Barry can be reached at email@example.com.
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