Case Studies: KIDNEY-ONC
LISTSERV Choice Awards Grand Prize Winner: KIDNEY-ONC
A Subscription for Life: ACOR's KIDNEY-ONC Email List is on the Frontlines of the Fight against Cancer
Email Community Helps Patients, Contributes to Research and Embodies e-Patient Movement
KIDNEY-ONC is a LISTSERV® list with the purpose of life itself: "Our goal is to save and extend lives and to help people have the best possible quality of life," says list owner Robin K. Martinez. Designed to provide information and support to patients and caregivers dealing with renal cell carcinoma and other more rare types of kidney cancer, this LISTSERV list is a member of a consortium of over 100 mailing lists hosted by the Association of Cancer Online Resources (ACOR). The KIDNEY-ONC list began in 1997 and is currently helping some 2000 subscribers cope with cancer. The list has also established itself as a key contributor to the body of knowledge on the disease and the e-patient movement.
"E-patient is the catchy new name to describe what our list has always been about: empowering people to take an active role in their own health care. ACOR's LISTSERV lists help people learn about the condition they're dealing with and everything related to it, such as what treatments might be considered and how to choose among them, dealing with side effects, knowing what to expect, what to ask the doctor, important medical terms, emotional support, payment issues and much more."
Martinez became the co-list owner of KIDNEY-ONC with founder Steve Dunn in January 1998. "Our founder and original list owner Steve Dunn offered a stunning depth and breadth of information on kidney cancer. Steve died of meningitis in 2005 and will always be missed. He set the tone for the list, which continues today," Martinez says. "People come, learn, experience, and then share their hard-won knowledge in a supportive and friendly atmosphere. Newcomers are welcomed and swiftly given the information and support they need to become proactive. Within six weeks they've acquired a whole new knowledge base and an attitude of hope," says Martinez.
The help and hope that the list offers to members takes many forms. Here are some examples from several list members, including list owner Robin Martinez:
"I remember one Christmas Day when a member wrote in needing immediate help. Within a few hours, there were many useful replies. It is wonderful to know one can ask for help at any hour of the day or night and find people who care."
– Robin Martinez
"This list has been a life saver for myself and my husband as we set out on our journey with kidney cancer. This list has been the answer to my prayers. We entered this journey with just the words 'kidney cancer,' and here is where I have found answers and hope."
– Jeanne Wagner
"Quite often a member describes a problem and another member knows immediately what it might be and what might help. We've had situations where the response has been, 'Get to the emergency room' or 'Contact your doctor immediately', and this has been the impetus for the person to get needed care. Sometimes people need that extra little push or support to check further into a situation, pursue a treatment, or have a conversation with their doctor that they've been hesitant about."
– Robin Martinez
"I will be eternally grateful to the list members for their willingness to slog through medical journals, articles and abstracts and translate the jargon in them to us lay folk. Not only do list members share their knowledge, but they give others (including me) the courage and basic vocabulary to dive into the journals, articles and abstracts, too. Because of this site, I have a better understanding of our disease and treatment modalities and feel better able to discuss treatment options with my doctors."
– Sandy in Utah
"The list owners frequently get letters thanking us for information provided by the list, which the members note has extended a person's life or even led to complete remission of their cancer. Even Stage IV renal cell carcinoma can sometimes be completely eliminated, which is extremely rare among cancers."
– Robin Martinez
"KIDNEY-ONC is an invaluable LISTSERV list that has given me great insight and confidence – indeed, great hope – as I face kidney cancer. My reliance on KIDNEY-ONC for information, support, encouragement, guidance, clarification, and reassurance has kept me on course since I was first diagnosed and then discovered this wonderful assembly of 'cancervivors'."
– Doug in Plattsburgh, New York
The challenges of research funding is one of many ways KIDNEY-ONC is a united community: "We often face the challenge of a promising drug going off-track; either the manufacturer wants to drop the research or switch it to a different cancer or ignore some evidence we think is important. Our members often get involved in urging a company to continue their research in kidney cancer. We also help with a grassroots lobbying effort to get Washington to spend more research dollars on kidney cancer; it's underfunded compared to quite a few other cancers. Some groups speak with a single voice; we speak with many. We are a coalition of crusaders for survival."
"Over the years, we have had subscribers from the United Kingdom, Denmark, France, South Africa, Germany, Japan, India, Australia, China and Italy, among other countries. All nations are welcome. Although the list is mainly English-speaking, we manage to make ourselves understood to each other despite language barriers," Martinez says. She adds that total numbers grow slowly at this point because members come and go as their needs change or are met.
As the topic of the list involves a very specific group of people, most subscribers come to KIDNEY-ONC list through word-of-mouth from other people with cancer and their caregivers, via Internet searches, and, occasionally, through referrals by medical professionals. As the list has evolved over the years, Martinez says several new mailing lists were formed in response to perceived needs on the KIDNEY-ONC list, with new lists being added as needs arise. "We leave the technological improvements to ACOR, which is heavily involved in helping Internet users become educated and active patients through various modes including LISTSERV lists," says Martinez, adding "I have learned a lot from our L-Soft technical support advisor. L-Soft has been extremely supportive of ACOR and KIDNEY-ONC, and we're grateful. Because email is so widely available, we've been able to reach a broad range of subscribers who otherwise might not be able to get the information they need."
"Civility is vitally important in conducting meaningful discussions by email," Martinez notes, offering some additional tips for email discussion lists:
- List owners must decide if some topics (like religion or politics) should be off-limits.
- Develop a good set of list rules and distribute them to members as they come in so they'll know what is expected.
- "Enforce the rules fairly and firmly. Often for me, this involves a letter to the list about what is and is not allowed as well as a polite private note to the offender. The object isn't to quell discussion but to keep it on-topic without flame wars," says Martinez. "With this good start, it is not difficult to build a cooperative community. Being a list owner has taught me always to put the best possible interpretation on everyone else's comments."
"Our members agree the LISTSERV email list is an invaluable resource. Through the list, many have found clinical trials or treatments their own doctors didn't offer and so didn't mention," says Martinez. "People come in without any medical vocabulary and within a few weeks, they know the lingo and are on a completely different level in dealing with doctors. It's amazing what a difference it makes in people's lives."
See tips and best practices for running a successful permission-based email community from Martinez and another award-winning LISTSERV list owner:
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