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Social networking, science, and prostate cancer support

Posted Jan 07 2011 12:00am

As many readers will be aware, we have a social network as an adjunct to The “New” Prostate Cancer InfoLink. We were therefore very interested in what appears to be the first published scientific paper on the application of social networking specifically to prostate cancer education and support.

Here is what they found:

  • 82/501 threads (16.4 percent) that had 1,630 posts met their eligibility criteria.
  • Specific questions were asked in 65/82 eligible threads (79 percent)
  • Threads were most commonly started to ask for
  • Responses to questions within these threads focused on
  • Other commonly suggested actions included
  • The rate of advice for radical prostatectomy (RP) was 67 percent as compared to 82 percent for radiotherapy.
  • 75 percent of men expressing an initial therapeutic preference were confirmed to have proceeded with that form of treatment.
  • Posters frequently use a “tentative” language style (based on linguistic analysis) and avoid “common” language.

In the abstract to their paper, the authors conclude that, “Patients readily receive information, advice and emotional support as part of an online support group. The scientific evaluation of an online support group is a complementary way of getting to know our patients’ needs and worries. Patient-physician contact can benefit from this knowledge.”

The study is dense with data, although the authors carefully point out that it is hard to interpret some of those data.

Some findings that stood out for us in this study include the following:

  • A small percentage of the discussion participants (about 5 percent) contribute to the majority (70 percent) of the discussions. This reflects our own experience on our social network and on PPML (the ACOR prostate cancer list-server) .
  • The use of “tentative” language by participants, which we interpret as a “legal caution.” Patients are not physicians. The use of terms like “may,” “could,” and “in my experience” would seem to reflect an awareness on the part of many experienced patient counselors that they are “not doctors,” and that giving specific medical advice comes with some degree of legal risk.
  • The authors appear surprised by the degree of use of medical terminology, but in our experience many patients can pick up the relatively accurate use of this terminology quite quickly when it applies to them! We have always believed it is an important component of the social networking process to help patients understand that terminology, since many doctors tend to use it unthinkingly, and fail to “translate” for their patients (using anatomical terms like “apical” without any explanation).
  • The authors recognized the unknown benefits of online social networks to “lurkers” who do not actively participate but who learn from the questions and answers of others. We agree that it is hard to estimate the educational benefit of “lurking” on social networks in this way.

What was of most interest to us, however, was that a group of urologists had started to explore, with a degree of scientific rigor, the role of social networks in patient education, support, and the decision-making process. In their conclusion. Huber and his colleagues make three statements that we reproduce below in full:

Scientific evaluation of peer-to-peer counseling is a complementary way for clinicians to get to know their patients’ needs and worries.

Without the necessity of direct personal contact, patients readily receive information, advice and emotional support. Emotional issues are covered whether or not they are requested.


… social interaction via the internet is successful and appears to be a regular part of coping with the disease as well as the decision-making process.

We look forward to further scientific investigation of the value of online systems and social networking by the urology community in the management of prostate cancer as we all move closer to a more “participatory” style of medicine, in which the patient and the clinician operate together is partnership as opposed to in a provider-client structure.

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