ACOR’s “KIDNEY-ONC” kidney cancer patient community was recently honored with the “Maily” Listserv Choice award in this, the 25th anniversary year of Listserv® technology. In announcing the award, the vendor’s site (Lsoft.com) described the KIDNEY-ONC list as an “exceptional email community,” and quoted volunteer list manager Robin Martinez:
“The award recognizes the KIDNEY-ONC LISTSERV list for connecting people to provide life-changing and indeed life-saving information and support. The credit goes to our wonderful KIDNEY-ONC members whose deep dedication to finding and sharing information is matched only by their support and caring for fellow patients and caregivers. I am proud to be part of all this.”
She’s right; I well remember when this community gave me high quality, accurate, up-to-date information, within hours of my first message to them – five years ago this January. (And yes, I checked with my oncologist, David McDermott, at Beth Israel Deaconess – he confirms that KIDNEY-ONC’s information was indeed accurate, and I’ve since learned it’s better than many community oncologists have.)
I also well recall that when I was about to enter treatment, I asked my ACOR buddies what to expect. (The exotic treatment I got has side effects that the American Cancer Society describes as “often severe and rarely fatal.”) When it hit, I was ready – and today Dr. McDermott says “I don’t know if you could have tolerated enough to do the job if you hadn’t been so prepared.”
How’s THAT for value in healthcare?
In a private note, Robin also encapsulated the life of a patient community manager: “Frankly, I’ve been so busy with kidney cancer activities that the thought of an award was the farthest thing from my mind. I was stunned, thrilled, and gratified to learn that Kidney-Onc is this year’s grand prize winner.”
In my speeches I often say “ACOR is very low-tech – a bunch of plain old plain-text Listservs – you can’t attach anything, you can’t even do boldface. ACOR proves that when it comes to social networking, it ain’t the platform, it’s the people.”
(“Listserve” is often used as a generic term, but Listserv® started it all – it’s the original, and trademarked, name of mailing list software introduced way back in … 1986!)