Diabetics looking to network with other patients online have a variety of options, including the availability of a doctor to answer questions, who reviews the material posted on the website, and which companies are allowed advertising space on the website.
A recent study of 15 social networking sites for diabetics discovered that the sites use a variety of approaches in terms of funding and the participation of site administrators and doctors in the discussion. The study was reported in the journal “Archives of Internal Medicine.”
“The most interesting thing is that there is so much variability between sites,” said Dr. William Shrank, with Brigham and Women’s Hospital in Boston. The study was headed by Dr. Shrank. “Patients really need to know what their options are when picking sites where they’re going to participate.”
The sites involved in the study allow diabetes patients to communicate with other patients, such as posting questions and responses and interacting on message boards. The sites ranged in size from 3,000 to more than 300,000 members.
While most of the sites do not have doctors available to answer questions or offer feedback, website administrators usually monitor message boards to ensure that the information presented is accurate.
Of the 15 sites studied in the investigation, twelve run advertisements from companies that manufacture diabetes medications, devices such as insulin pumps, or other products. Most of the sites are funded by those advertisements, whether partially or fully. Some sites, such as www.tudiabetes.org and www.diabetes.org (run by the American Diabetes Association), rely on volunteer donations or support from advocacy and research foundations.
David Edelman, the co-founder of Diabetes Daily (www.diabetesdaily.com), says that members on his site are only required to give minimal identifying information so that they do not feel their privacy is at risk. The site boasts about 65,000 registered members.
Both site members and forum moderators are responsible for ensuring that advertisements such as product pitches are removed from the message boards. Additionally, treatments that have not yet received approval cannot be mentioned by name anywhere on the website. Edelman says that the advertisements that do run on the website are only for “legitimate” products. He also noted that receiving sponsorship from a particular company or organization would not make for an “ideal model.” The site receives funding from a variety of sources, such as drug manufacturers and non-profit organizations.
Advertisements are the only commercial interests that Edelman allows on the site. “We have these rules and our values: you can’t give medical advice, you can’t have financial self-interest, you can’t promote your book. We want to try to get commercial influence out of the community,” said Edelman.
Dr. Shrank noted that backing by pharmaceutical companies “may be great,” but he noted that product promotion has been a concern in the past.
Shrank hopes that the research will show patients and doctors that there is a wide range of social networking options available to diabetics and help them choose sites to participate in by displaying the value of such sites. However, he stressed that the study’s intent was not to recommend any particular site over another. The perfect site for each patient will depend on what he or she wants from the experience, says Shrank. “Some patients may feel comfortable in a setting where there is no health professional oversight. Some patients may really want a health professional to answer questions.”
