Patient/physician sharing info blogs/forums in Germany

June 23, 2014 10:00 AM

I am interested in finding forums or blogs about breast cancer treatments in Germany to see the content and sentiment of conversations happening among patients and/or physicians. If they are behind a pay wall I would be interested in purchasing the data if possible. Thanks for input!
posted by mooselini to Technology (3 answers total)

Best answer: This is an interesting question. While I do not know of any specific blogs or online support groups/forums for breast cancer treatments in Germany, I do research in a similar area (online support groups for chronic kidney disease patients) and the findings from both my dissertation work and previous literature suggest a few things:

• Physicians aren't really communicating on these sites; it is mostly patient-to-patient communication (with some caregivers either standing in as proxies for patients or with their own issues they want to discuss). There are sometimes one or two doctors and a few nurses on these sites, but they are few and far between.
• Lots of this stuff isn't happening in online support groups or on blogs anymore; it's largely moved to Facebook. This has some very interesting implications for sharing and disclosure, but that isn't what you're asking about. You might want to look at Facebook for forums about breast cancer written in German, though.
• Physicians often don't recommend that patients use the Internet for health information because they are worried about misinformation - although my findings suggest that verification of the information found online (and verification of the information gleaned from healthcare providers) is a crucial and necessary part of the seeking/decision-making process. This is changing, however, as more providers become comfortable with information-seeking online.
• Patients do not just share information about treatment: they share all sorts of things both related to and not related to their condition. Learning a "new normal" is all-encompassing and something like breast cancer is a "new normal" - you might be interested in the work of Merle Mishel - Dr. Mishel worked specifically with breast cancer patients and developed the the theory of uncertainty in illness in the field of nursing, and her work is fascinating and very relevant (although she doesn't look at online information sharing specifically at all, her work has greatly informed the work of others that look at questions about online information seeking/sharing for illness).
• There are generally three types of supportive activities found online among patients: informational support, emotional support, and tangible support (to a much lesser extent). Informational support is when patients share factual or experiential information with one another. Emotional support is when patients share coping strategies or express care towards one another, and it is an essential part of community-building online. Tangible support is when people actually give tangible goods, like money or rides to the doctor (it's less common online because of the geographical dispersion of participants, I believe). Since support in general is emotionally driven, it can be very difficult to piece out which comments are emotionally supportive and which are informationally supportive, and these delineations are maybe not as helpful in practice as they are in theory.
• Often, people join online support groups or forums because they are looking for experiential information: What is it actually like to go through a specific treatment, or to cope with a particular aspect of the disease? People feel like there is information they can't get from healthcare providers because HCPs have not "been through it." Furthermore, HCPs often have so much more knowledge of the disease that they may not remember what it is like to know nothing, so the information they share with patients can be overwhelming and confusing.
• Patients often talk about using the Internet to learn what types of questions to ask their HCPs. We don't know what we don't know. An online forum can give you ideas or areas to explore further with an HCP; it can also open you up to treatment options that you weren't informed of by your doctor. In fact, many times patients learn about a treatment option online and then they teach their HCPs about that treatment option.

Here are some articles about online support groups for breast cancer in general, covering the types of supportive activities found online and the types of things people talk about on breast cancer forums. If you can't access any of the articles, let me know and I can send them to you so that we can have an academic discussion about them via email. Some of the article links go directly to a PDF of the article, while others go to the PubMed or publisher page.

• Gonzales, M. J., & Riek, L. D. (2013). Co-designing Patient-centered Health Communication Tools for Cancer Care. In Proceedings of the 7th International Conference on Pervasive Computing Technologies for Healthcare (pp. 208–215). ICST, Brussels, Belgium, Belgium: ICST (Institute for Computer Sciences, Social-Informatics and Telecommunications Engineering). doi:10.4108/icst.pervasivehealth.2013.252109
• Han, J. Y., Shaw, B. R., Hawkins, R. P., Pingree, S., Mctavish, F., & Gustafson, D. H. (2008). Expressing Positive Emotions within Online Support Groups by Women with Breast Cancer. Journal of Health Psychology, 13(8), 1002–1007. doi:10.1177/1359105308097963
• Hartzler, A., & Pratt, W. (2011). Managing the Personal Side of Health: How Patient Expertise Differs from the Expertise of Clinicians. Journal of Medical Internet Research, 13(3). doi:10.2196/jmir.1728
• Kim, E., Han, J. Y., Moon, T. J., Shaw, B., Shah, D. V., McTavish, F. M., & Gustafson, D. H. (2012). The Process and Effect of Supportive Message Expression and Reception in Online Breast Cancer Support Groups. Psycho-Oncology, 21(5), 531–540. doi:10.1002/pon.1942
• Lieberman, M. A., & Goldstein, B. A. (2006). Not all negative emotions are equal: the role of emotional expression in online support groups for women with breast cancer. Psycho-Oncology, 15(2), 160–168. doi:10.1002/pon.932
• Salzer, M. S., Palmer, S. C., Kaplan, K., Brusilovskiy, E., Ten Have, T., Hampshire, M., … Coyne, J. C. (2010). A randomized, controlled study of Internet peer-to-peer interactions among women newly diagnosed with breast cancer. Psycho-Oncology, 19(4), 441–446. doi:10.1002/pon.1586
• Shaw, B. R., Han, J. Y., Hawkins, R. P., McTavish, F., & Gustafson, D. H. (2008). Communicating about Self and Others within an Online Support Group for Women with Breast Cancer and Subsequent Outcomes. Journal of Health Psychology, 13(7), 930–939. doi:10.1177/1359105308095067
• Shim, M., Cappella, J. N., & Han, J. Y. (2011). How Does Insightful and Emotional Disclosure Bring Potential Health Benefits? Study Based on Online Support Groups for Women With Breast Cancer. Journal of Communication, 61(3), 432–454. doi:10.1111/j.1460-2466.2011.01555.x
• Skeels, M. M., Unruh, K. T., Powell, C., & Pratt, W. (2010). Catalyzing Social Support for Breast Cancer Patients. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (pp. 173–182). New York, NY, USA: ACM. doi:10.1145/1753326.1753353
• van Uden-Kraan, C. F., Drossaert, C. H. C., Taal, E., Shaw, B. R., Seydel, E. R., & van de Laar, M. A. F. J. (2008). Empowering processes and outcomes of participation in online support groups for patients with breast cancer, arthritis, or fibromyalgia. Qualitative Health Research, 18(3), 405–417. doi:10.1177/1049732307313429

posted by k8lin at 11:09 AM on June 23, 2014 [3 favorites]

Response by poster: This is fantastic! Thank you!
posted by mooselini at 11:41 AM on June 23, 2014

Best answer: One forum, a second one, a third. But you really just have to search for "brustkrebs foren" and you'll find more.
posted by cmonkey at 9:00 PM on June 23, 2014