MEETING THE NEEDS OF PATIENTS, HEALTHCARE PROVIDERS, AND THE PUBLIC
Susan Leclair, PhD, Consumer Information Response Team Chair
Knowledge is power. Patients who understand their laboratory results are more likely to participate in their healthcare from a position of knowledge. The Consumer Information (CI) Response Team is a group of ASCLS members who provide this vital service to patients, healthcare providers, and the public by answering their questions about laboratory diagnostic testing.
How it all Began
In the mid-1990s patients began searching for information about their conditions, medications, or how to continue their quality of life with serious illnesses. The Association of Cancer Online Resources (ACOR) formed with the initial purpose to provide a group for those with cancer to meet and not feel alone. However, this focus expanded with increased questions about tests and treatment.
As ACOR members increased, disease specific subgroups formed. An initial member of the Hem-Onc listserv, I began to answer questions related to laboratory diagnostic tests.
At the 1999 ASCLS Annual Meeting, a group of ASCLS colleagues (the late Joyce Behrens, Nancy Brunsel, Kathy Doig, Lynn Maedel, Tim Randolph, the late Bunny Rodak, and Kathy Waller) gathered and discussed the ACOR and the need for understandable and pointed answers to laboratory test-related questions. The group agreed that ASCLS was the professional organization that could fill this need.
We requested that the ASCLS website have a laboratory test information site that also included a “submit your question” function. This site was provided by ASCLS-PA. The site was not publicized. The first week an average of three questions per day were submitted. By the end of November—only four months after the group formed—the number of questions submitted exploded and the response team requested assistance from the ASCLS Scientific Assembly-Chemistry, Hematology, Immunology, and Microbiology. This expanding community service to the consumer prompted a three-day retreat sponsored by ASCLS to clarify the purpose; strategies for improved implementation of the service; and legal counsel.
In 2000, several laboratory organizations collaborated to form the Lab Tests Online website. Laboratory industry partners provided financial support to develop the site, the other organizations provided web expertise, and the group collaborated to develop the content information about laboratory tests. ASCLS asked the CI to work with Lab Tests Online and answer questions submitted on that site.
What’s Happening Now
Since 2000, more than 75 ASCLS members from across the United States have volunteered for CI, with many of the original members still active. From an average of three questions per day in 1999, a breaking point was reached in 2005 with a little over 200 questions per day.
With insufficient CI members to handle this question load, a cap of 75 questions per day was implemented and is still in effect today. Questions are sent from patients, parents, physicians, nurses, other healthcare providers, lawyers, students, and more. Since its inception, more than 250,000 questions have been answered by the ASCLS CI volunteers.
Over the years the team recognized the critical need for someone to take the time and explain laboratory values. Static information pages are informative, to a point. People want to know what is happening to them, what the test results mean, and that requires a specific “personalized” response.
The CI volunteers do not diagnose; they explain and advise on additional questions that patients can ask their physicians. Patients who want to be active in their healthcare need information. The CI offers a unique and informative service to patients across the world who, maybe for the first time, know there are professionals who work in a clinical laboratory and who produce and explain valuable information.
How it Works
Discipline specific teams—chemistry, hematology, immunology, and microbiology—answer the questions. Volunteers select a discipline and a day of the week to respond. For example, there might be four CI members who selected chemistry and Monday, and each would select one Monday per month.
Training begins with the signing of a formal confidentiality form. An experienced CI member is assigned to mentor and guide new volunteers as they develop their “voice” in answering questions posed by a variety of consumers. Some members have a formal style, while others are more informal. What matters is that the truth be seen in the replies.
Once a new volunteer is comfortable with responding to a variety of types of questions, they select a day of the week and are placed on the rotation schedule. Volunteers are never alone and can reach out to all CI members for advice. In return for the hours of work on the CI, members receive 10 hours of CEUs. The real reward is the responses from the consumers.
“Am I impressed or what! Here I was, alarmed at home, and there you are—right on time with reassurance that nothing that is happening inside my body should keep me pacing the floor at night. What a service! I send you my gratitude. I must tell everyone I know about this service. I have already emailed my own physician. Whoever is funding you may I just say: Money well spent. Keep up the good work. Blessings.”
“Thank you very much for your prompt reply. The service your profession provides is truly remarkable. The fact that you work ‘behind the scenes’ is immaterial to a person who has received correct treatment due to the initial accurate work done by professionals like yourself. God bless you all.”
“You guys are awesome. I found this site about two years ago and have used it about four times. For those of us that seek knowledge, since knowledge is power, I love this site.”
We Need You—Join the CI
Currently there are 51 active CI members. Thank you to our volunteers for their dedication and commitment to providing a critical service to consumers, for promoting the profession, and for putting “A Face to the Name.”