Social networking, science, and prostate cancer support


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.

Huber et al. set out to study the effects of patient-to-patient communication with regard to decision-making in localized prostate cancer, by following discussion threads on the largest German-language online prostate cancer support system. The authors screened 501 threads over a period of 32 months (between May 2006 and December 2008). However, they focused their research exclusively on threads started by patients who were newly diagnosed with localized prostate cancer and in which clinical decision-making was included as a key topic.

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
    • Treatment recommendations (66 percent)
    • Information on the course of treatment (46 percent)
    • Emotional support (46 percent)
  • Responses to questions within these threads focused on
    • Treatment recommendations (40 percent)
    • Emotional support (37 percent)
    • Personal experiences (28 percent)
  • Other commonly suggested actions included
    • Seeking a second pathological opinion on biopsy cores (51 percent)
    • Additional imaging studies (40 percent) — although the authors note that such recommendations may be inappropriate or “not medically necessary.”
  • 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.

and

… 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.

5 Responses

  1. Does anyone have the bibliographic details of that Huber et al. study?

    Cheers,

    Gavin

  2. Gavin: Just click on the link at the beginning of the second paragraph. The reference is given with the abstract.

  3. I consider myself fairly knowledgeable about the power of patient to patient interaction ~ and it is enormously beneficial to new patients and veteran patients alike. That was how I started gathering information when I was diagnosed, in fact my urologist handed me my biopsy pathology report and told me that it would come in handy as I did my research on the ‘net. My first search for a “chat” forum in 2006 led me to http://www.healingwell.com at which I am a current member and a discussion forum moderator. As it did for me, I see daily the flow of new members becoming educated and prepared by the information and advice of other patients.

    While I did not keep statistics, I do concur with the findings of the above study. Interestingly, I still find doctors who discourage the use of the Internet because of “faulty” information. While it was not true for me, it has been my experience that the amount of faulty information in the doctor’s office can easily exceed what a patient might find in strong online discussion forums, the social network here, and talking to other patients. In our cyberworld, we find true experiences with both the upside and downside of therapy. This is information that often get’s sugar-coated in the doctor’s office. While I consider live support groups a better option than online versions, both can truly benefit every patient out there. (I am also a chapter leader for a live Us TOO support group and have much experience in the live forums as well.)

    The one downside of cyberforums I would point out is that some members tend to be a bit more cavalier and sometimes discourteous. “Braver behind the keyboard to state” about imperfect data and their biases while freely blasting off against options they did not choose. Still, the benefits outweigh the negatives. The patient commonly has better information than where the medical profession leaves us after diagnosis. Someone is there 24/7/365 when you need them.

    And that is a wonderful thing.

  4. I had external beam radiation and brachytherapy in 1999 (the dark ages). I still have problems at night getting up all the time to urinate. I have tried just about everything — including hyperbaric oxygen treatment. I was doing OK taking 30 mg of tamazpan for about 3 years. That seems to not work now, up almost every hour.

    Thank you

  5. Dear Steven:

    You might like to join our social network to see if anyone there has ideas that could help you.

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