Can you help with this study of the value of prostate cancer social networks?


As many regular readers will be aware, The “New” Prostate Cancer InfoLink likes to be able to assist researchers who are studying various aspects of prostate cancer and the use of online educational and informational services in addressing the needs of patients and caregivers.

A graduate student in health psychology at the University of Nottingham School of Medicine  in England is studying whether MALE members of online prostate cancer and testicular cancer support groups who are > 18 years of age:

  • Think there are health and social benefits of membership of such groups, and if so, what those benefits are
  • What information members take from such online support groups and how that information is used (either positively or negatively) in future treatment decisions.

The student (with guidance from her supervisor) has developed a straightforward questionnaire than can be accessed on line. Participation is anonymous and voluntary – participants are free to withdraw at any time. The questionnaire can be completed in 15 to 30 minutes based on the sitemaster’s personal experience.

This study has been approved by the Ethics Committee of the University of Nottingham School of Medicine

Should you have questions or concerns before, during, or after participation in the study you can contact the student investigator, Tracy Notman, directly by e-mail, or alternatively you can contact her supervisor.

7 Responses

  1. OK, sure thing. Will do.

  2. Done (thorough YANA site).

  3. Thanks, very interesting.

  4. My posts were erased and I was banned before I could see it posted at Healingwell.com for mentioning HIFU with my positive results. Occasionally they let someone mention HIFU with good results or that post slips by without them erasing it, so I think little of that site. These surveys never ask about particulars like that, so I probably won’t bother. YANANOW and you guys are the sole good info sites; here, Mike tends to look down his nose at me and HIFU.

    I’ll think about it.

  5. Dear Ron:

    I don’t “look down my nose” at you at all. I just would like someone to please publish some data that actually substantiates the claims that you make about HIFU. No published data actually correlate to the claims you make. That doesn’t mean that HIFU didn’t work for you (or for others). It does tend to imply, however, that it doesn’t work for everyone. Indeed, there was a new post this morning on the social network from another patient who apparently had a poor result on HIFU.

  6. Mike,

    I find this survey compelling considering the benefits of others sharing their own perspectives online. And many will share online who wouldn’t do it in person. Not to mention the challenges of understanding the abstracts that this web site addresses and defines.

  7. I will have a look later.

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