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For-Profit Support

"The Company is free to use, without any compensation to you, any ideas, concepts, know-how or techniques contained in any communication you send to the Site for any purpose whatsoever... " Oncology .com terms of use.

As men and their partners turn to the Internet in increasing numbers in search of help with prostate cancer, online support is changing. Commercial sites such as cancerfacts.com and oncology.com are acquiring existing online support groups, setting up new ones and putting their brands on them.
      E-mail lists, bulletin boards and chat rooms, which pioneer patients built up with their peers, increasingly now are run by corporations owned by people from medical industries including managed care.
      Multimillion dollar sites offer computerized features adapted from patient-to-physician sites or from paper and pencil tools that many patients use at home. Cancerfacts offers The Profiler for finding out your treatment options; Oncology.com offers The Personal Diary for keeping track of meds and doctor visits. These computer programs, portrayed as a true bonus, may have hidden costs.
      On top of coping with cancer and dealing with doctors you now need to become a sharp-eyed consumer of any support services offered to you. What's in it for them? New websites are hungry for visitor "traffic" to start generating revenue. With millions invested, it's a priority to get "eyeballs" glued on "page impressions" so advertisers will join in.
      Have we all been living in a never-land of charmed volunteerism -- while managed care, medical equipment and medical information industries sat back asking, how can we make a buck off of this? Probably, and it is not easy to see how the new arrangements really serve cancer patients' needs.
      Larger than driving traffic from non-profit lists to for-profit lists is the job of attracting folks with cancer who are not yet online. AOL did it for regular folks with a deluge of coasters and advertising on the front of every bus in the USA, it seemed. But for cancer patients it makes more sense to start at the point of greatest influence, the doctor's office.
      One way of working up to that is to acquire existing cancer support e-mail lists. Listserv ownership is a complex arrangement, however, and patients have copyright over their own posts. Buying lists can open Pandora's box. It is less traumatic all round to get advertising rights on the existing lists and let natural curiosity drive traffic to the commecial sites. This gradually weakens the volunteer, non-commercial aura of the existing support group list as it shimmies over to live under a for-profit logo with (hopefully) bunches of new subscribers
      Even lurkers, who subscribe to a list but seldom if ever post, will have a commerical role. Lurkers used to spend their time becoming quietly educated about their prostate cancer. Now, with this new form of commerical support group, the lurkers can pay for their keep by watching ads!
       It does not end there. Cancerfacts.com says that they will pay "incentives" to patients and doctors who help them get onto waiting-room computers. This is something really new -- you are just diagnosed with prostate cancer or struggling after many years of dealing with it. And an online support group will reward or pay you to spend some of your doctor visit as a salesman for them! A new level of support!
      This morning I joined oncology.com to test out the couples and prostate cancer discussions areas. After you give them your e-mail address and other information, they show you their full terms and conditions. Of which some are outrageous in the gross way they seek to disempower rather than empower the cancer patient and family. They say

Anything you transmit or post may be used by the Company or its affiliates for any purpose, including, but not limited to, reproduction, disclosure, transmission, publication, broadcast and posting. Furthermore, the Company is free to use, without any compensation to you, any ideas, concepts, know-how or techniques contained in any communication you send to the Site for any purpose whatsoever, including, but not limited to, developing, manufacturing and marketing products and/or services using such information.

How dare they do this to people who have cancer?
       The new commercial online support may bring some enhancements, which volunteer groups may learn to use. This is to be hoped. For if volunteer and non-profit prostate cancer support groups let themselves be weakened by the rapid growth of commercialized support, who will keep up with the really significant fine print -- such as the print on all those consent forms that cancer patients must sign?
      As for joining, this morning -- something went wrong with the online form. It kept sending me back to the opening page, so I never got to enter the room. Worlds away from the old-fashioned support groups where they greet you with a handshake and a smile.