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Susan Leclair
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 ( 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 hospital.

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, 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 accurate information.

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."

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