Meet Activist Susan Leclair
By Nancy Keene
Susan Leclair, a clinical laboratory scientist specializing in hematology,
teaches at University of Massachusetts Dartmouth. Several years ago,
standing in front of a class of students, she discovered something that
changed her life. She says, "This group of students was technically
magnificent, but they weren't able to connect the results to real people."
She decided to collect and share real stories to help them understand that
blood cells don't exist in a vacuum--they come from human beings.
Leclair, who has never had cancer, went online and became one of the first
participants of HEM-ONC, an online support group hosted by the Association
of Cancer Online Resources (
www.acor.org). She says, "First, I just
listened to the incredibly moving stories but didn't participate. Then one
day, I took a big leap into the unknown." She started answering lab
questions for participants in down-to-earth language. She knew from the
list that anticipating lab tests or receiving the results could be
terrifying for patients. Numbers on lab sheets can determine if the
treatment is working or if an exhausted patient can go home from the
She began fielding questions about lab values on a daily basis. She says,
"I don't talk about treatment or give advice; I just describe in very clear
terms the test itself and how to interpret the results. I've probably
defined MCV several thousand times." The list administrators gave Leclair
permission to share some of the stories with her students. She removes all
names or identifying information and tells the stories to illustrate the
effects lab results have on the lives of patients. "Understanding the
effect of their work on people's lives makes them better scientists and
probably better people."
As the numbers of subscribers to the lists swelled, the HEM-ONC list began
to subdivide into more disease-specific lists. (ACOR now hosts 99 lists
with almost 50,000 subscribers). Leclair laughs when she recalls how the
list owners just kept signing her up for each new list that formed. She now
belongs to six lists and receives an average of 200 emails a day from them.
She goes to her office early every morning to respond to her mail. Her
colleagues know she's reading her list mail when they hear her laughing or,
on occasion, crying.
Answering questions on the lists began to consume more and more time, so
Leclair went to her professional organization, the American Society for
Clinical Laboratory Science, with a proposal. "I asked them to provide a
service for consumers. I wanted them to help me provide accurate
information to anyone who needed it." ASCLS, located at
www.ascls.org, agreed. On their organization's homepage, under the
"What's new" column, are the following words in bright red letters, "Have
questions about laboratory testing?" People can click here to read the
society's consumer laboratory information page (with lovely photographs
provided by Leclair). At the bottom of this page, consumers can complete an
online lab testing information request form to ask questions about tests or
get help interpreting the results. Within 24 hours, a certified clinical
laboratory scientist will answer.
Originally, seven of Leclair's colleagues each volunteered a day a week.
Now, the service is expanding so that each day's questions are handled by a
team with members of different subspecialties. Most days, experts in
hematology, immunology, cytology, microbiology, or chemistry are available
to answer questions in their area of expertise. Answers are customized to
the specific question asked.
Leclair finds that the relationships forged online over the years have
spilled over into her real world. When the administrator of the CLL list
went to Boston for a bone marrow transplant, Leclair already knew that her
husband liked tapioca pudding. So she showed up at the hospital with a big
bowl. Leclair explains, "We used Barb's BMT as an excuse to finally meet in
person. We had a wonderful time and met again the next year for dinner when
she came back for her one-year appointment. This June there will be a
dinner gathering of CLL patients, caregivers, and supporters in Boston.
People are excited to meet after years of sharing an enormous intimacy
about their illnesses."
In the future, Leclair hopes there will be dozens of online sites staffed
by professionals who answer patients' questions in radiology, nuclear
medicine, or other specialties. She says, "Imagine how wonderful it would
be if you could sit down in your pediatrician's office and log on to a site
that explained the strep throat test." She explains that in a perfect
world, the physicians would have the time and background to thoroughly
explain tests and results to patients. However, since this does not always
happen, the next best plan is to provide places where people can go to get
Leclair hopes her method of helping others understand the sometimes-arcane
world of clinical laboratory science will catch on. She says, "There is
such an enormous need for information and support." She recently gave a
lecture on interpreting laboratory results to an auditorium full of lay
people. After the lecture, a long line formed. Each person handed over a
lab sheet and said, "Could you help me please?" She sat for two hours
explaining what the numbers meant. She said, "I've never been so humbled.
We have a responsibility to give people the information they need to make
informed choices and to feel comfortable with their treatment."