The Prostate Cancer InfoLink
“I hope you are not one of those used car salesmen turned robotic surgeon.” Rhonda said that her husband had had his prostate removed. She sounded like she regretted his decision. If so, she is not alone. A paper to be presented at a urology meeting reports that the likelihood of regret is approximately 2.5-fold higher for men having robotic prostate surgery.
I am a prostate cancer surgeon. In 1999, I introduced minimally invasive prostate cancer surgery to the United States. The surgery that Rhonda’s husband had is a form of this surgery. Given that minimally invasive prostate surgery reduces bleeding and pain, her words seem ironic. Why would a technical advancement that reduces bleeding and pain be associated with regret? There is no answer, although regret may represent a mismatch between expectations and delivery.
Rhonda’s regret comes in the context of acrimony in the public arena. Consider that 2007 saw death threats against commissioners of the Food and Drug Administration if they voted wrong on a prostate cancer vaccine. In various ways, one picks up signs that communication between the physician and prostate cancer patient communities has broken down. One feels that expectations are not being met and frustration by patients is intense, that there is a need to build bridges. The question is how.
In November 2007, the not-for-profit Prostate Cancer Mission, which I chair, held a public experiment. It conducted a seminar in which world experts on various aspects of prostate cancer addressed an audience of lay men and women. The event carried no drug company or device maker sponsorship. It succeeded brilliantly at showing that doctors and patients can enjoy each others’ company and learn from one another. When commercial bias is minimized, we can build bridges and communicate.
The question then became how to leverage the positive experience of 300 people into something broader and more sustainable. The obvious answer is the internet, which provides an unlimited potential to share information. As it stands, most of what one finds on the internet today is biased, ignorant, or shrill. It is not useful to the vast sea of men and women who need simple, relevant, and interactive information. What do do?
In 1994, the world’s first prostate cancer web site was introduced. It ran as the New Prostate Cancer InfoLink until it died a computer viral death in 2001. Uniquely, the InfoLink presented articles in simple English and offered an “Ask Arthur” section in which men and women could write in questions about their situations and get answers.
We are now introducing the New Prostate Cancer InfoLink as a modern incarnation of the original. Like the original, it will have articles in simple English that are written by some of the world’s foremost authorities on prostate cancer. It will have a blog to help you interpret the news. Uniquely, it will have an expended Ask Arthur that now brings a doctor, layman, and wife with 50 man-years of prostate cancer experience. You can get information and news and online, interactive guidance about your situation.
We are also developing a New New Prostate Cancer InfoLink social network. Modeled on Facebook, this sister site is far less structured and permits organic growth, group formation, and broadcasting of questions and answers. Here we can also bring together doctors, scientists, patients, government officials … anyone with an interest in prostate cancer. It is our hope that the Prostate Cancer InfoLink sites will let us build bridges between physician and patient communities to the benefit of both.
If you run a web site or blog, please consider providing a link to the sites. Then you too can be part of a global bridge building effort: