Case Studies: KIDNEY-ONC

LISTSERV Choice Awards Grand Prize Winner: KIDNEY-ONC

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:

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."

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