Medical histories can be rather dry affairs: a doctor at
a desk interviews a patient while filling out a form. Suppose instead
the patients recorded their medical histories, using videotape
shot at home, outdoors, everywhere--and could take a few weeks to
do the job. Under the guidance of instructor in pediatrics Michael
Rich, M.D. '91, patients are doing exactly that, becoming amateur
movie directors and reinventing medical histories as multimedia
events.
Frustrated
by the limitations of the doctor-patient interview, Rich, who specializes
in adolescent medicine, decided to give camcorders to 20 asthma
patients so they could show him their lives, instead of just
talking about them. Often, Rich explains, patients are not fully
truthful with their doctors, either because they fear a reprimand
or because they are simply unaware of risk factors to which they've
exposed themselves. Most people "have conceptual blinders on," he
says. "They don't see the things they live with on a daily basis."
Asthma is a "lifestyle disease" that medical tests and data on
a chart cannot easily describe. "Illness, as opposed to disease,
is a construct, " Rich explains. "You could take 10 people who have
the same disease in a biomedical sense, yet they will have very
different illnesses in terms of level of function, control level,
whether they pay attention to it or ignore it, whether they use
it to get special favors."
In
an effort to get a more complete picture of their daily lives, Rich
asked a group of patients ranging in age from 8 to 25 to make video
diaries over a span of four to eight weeks. He told them to include
tours of their homes, personal monologues about their feelings,
footage of daily activities, and interviews with family members,
as well as asthma-related activities like taking medication and
documenting symptoms. The diaries ran from four to 78 hours; the
median length was 22 hours of footage. [Funding for the video research
project came from small grants from Harvard and external sources;
the tapes were donated by the manufacturer. "It is actually cheaper
to do environmental surveys with a reusable $300 camcorder and a
few dollars' worth of tape per patient, which can be absorbed in
a clinic's patient-care costs," Rich reports, "than to do it the
current way, which costs about $500 per patient for a professional
environmental survey that is not covered by medical insurance or
Medicaid--and is thus prohibitive, and not done, for the most needy
asthma patients."]
Rich
expected to find some discrepancy between patients' reports and
what he saw on their tapes, but he was surprised by the magnitude
of the difference. The tapes contained some shocking footage. In
one scene, a patient's mother, holding a lit cigarette, switches
off the camcorder. (She vehemently declares in earlier footage that
she "always" goes outside to smoke, to avoid aggravating her daughter's
asthma.) Another video contains a home tour by a young boy who had
told his doctor that his bedroom was "100 percent free" of allergens
and asthma triggers. It was--but his video reveals what the doctor
didn't know, because he didn't ask: just inside the entrance
to the boy's home was a hallway filled from floor to ceiling with
plants. (The mold, dust, and bugs that plants can attract are serious
irritants for asthmatics.) A third diary shows a teenaged patient
coughing violently as she uses hairspray, an irritant that can trigger
a serious asthma flare-up.
How
did Rich get his patients to capture all these no-nos on film? It's
simple--he is on their side. He was careful, he says, to frame the
video diaries not as surveillance, but as a chance for him to learn
more about the patients' lives so that he would be better equipped
to help them. The tapes not only revealed risk factors that patients
had not recognized, but other factors they hadn't reported because
they felt powerless to change them--like a mother who smokes in
the house, but lies about it. "One of the strengths of this method
is that it captures things you weren't looking for," Rich says,
whereas an interview "is already framed by the questions you ask."
The videotapes also circumvented in part the censoring effect of
patients' expectations, documenting life "as is" and so giving doctors
a clearer sense of what it's like to live with asthma around the
clock.
Some of the films convey real drama. Several patients speak candidly
of their depression about the restrictions that asthma imposes on
their lives. One patient had the presence of mind to bring the camcorder
along as her mother rushed her to the hospital during a severe attack.
In the chilling sequence, the duration of the car ride is excruciating
as the girl's wheezing becomes progressively louder and her expressions
and gestures more distressed.
The project's roots lie in Rich's own moviemaking past. Before
attending medical school, he worked in Los Angeles as a documentary
filmmaker and screenwriter for feature films. He switched to medicine
out of frustration with the lack of quality in the film industry.
"I liked film too much to start hating it, " he says.
Next he will use video diaries to study obesity, another lifestyle
disease. The video-diary technology, Rich says, can help doctors
learn about any chronic, long-term condition that requires daily
management, such as spina bifida or sickle cell anemia. Ultimately,
the technique may have even wider effects, changing the way illnesses
are researched and the form of research reports. The March 2000
on-line issue of the journal Pediatrics, for example, contains
video clips from the asthma diaries--a first for that journal. Pointing
to what he calls "a recent upsurge in qualitative rather than quantitative
research, " Rich says he hopes his method will further debunk a
longstanding prejudice of the medical world: the idea that "if you
can't put a number to it, then it's not real data."
Frustrated
by the limitations of the doctor-patient interview, Rich, who specializes
in adolescent medicine, decided to give camcorders to 20 asthma
patients so they could show him their lives, instead of just
talking about them. Often, Rich explains, patients are not fully
truthful with their doctors, either because they fear a reprimand
or because they are simply unaware of risk factors to which they've
exposed themselves. Most people "have conceptual blinders on," he
says. "They don't see the things they live with on a daily basis."
In
an effort to get a more complete picture of their daily lives, Rich
asked a group of patients ranging in age from 8 to 25 to make video
diaries over a span of four to eight weeks. He told them to include
tours of their homes, personal monologues about their feelings,
footage of daily activities, and interviews with family members,
as well as asthma-related activities like taking medication and
documenting symptoms. The diaries ran from four to 78 hours; the
median length was 22 hours of footage. [Funding for the video research
project came from small grants from Harvard and external sources;
the tapes were donated by the manufacturer. "It is actually cheaper
to do environmental surveys with a reusable $300 camcorder and a
few dollars' worth of tape per patient, which can be absorbed in
a clinic's patient-care costs," Rich reports, "than to do it the
current way, which costs about $500 per patient for a professional
environmental survey that is not covered by medical insurance or
Medicaid--and is thus prohibitive, and not done, for the most needy
asthma patients."]
Rich
expected to find some discrepancy between patients' reports and
what he saw on their tapes, but he was surprised by the magnitude
of the difference. The tapes contained some shocking footage. In
one scene, a patient's mother, holding a lit cigarette, switches
off the camcorder. (She vehemently declares in earlier footage that
she "always" goes outside to smoke, to avoid aggravating her daughter's
asthma.) Another video contains a home tour by a young boy who had
told his doctor that his bedroom was "100 percent free" of allergens
and asthma triggers. It was--but his video reveals what the doctor
didn't know, because he didn't ask: just inside the entrance
to the boy's home was a hallway filled from floor to ceiling with
plants. (The mold, dust, and bugs that plants can attract are serious
irritants for asthmatics.) A third diary shows a teenaged patient
coughing violently as she uses hairspray, an irritant that can trigger
a serious asthma flare-up.
How
did Rich get his patients to capture all these no-nos on film? It's
simple--he is on their side. He was careful, he says, to frame the
video diaries not as surveillance, but as a chance for him to learn
more about the patients' lives so that he would be better equipped
to help them. The tapes not only revealed risk factors that patients
had not recognized, but other factors they hadn't reported because
they felt powerless to change them--like a mother who smokes in
the house, but lies about it. "One of the strengths of this method
is that it captures things you weren't looking for," Rich says,
whereas an interview "is already framed by the questions you ask."
The videotapes also circumvented in part the censoring effect of
patients' expectations, documenting life "as is" and so giving doctors
a clearer sense of what it's like to live with asthma around the
clock.
