NEW YORK (Reuters Health) - When people with diabetes are picking a place to connect to other patients online, they have a lot of choices to make — including whether there’s a doctor available to answer questions, and who reviews the website’s content, researchers reported today.
There’s also the question of who funds each diabetes discussion site, and what companies are allowed to advertise on them.
A new study of 15 of those social networking sites found that many have different approaches to both funding issues and involvement of site administrators and doctors.
“The most interesting thing is that there is so much variability between sites,” said Dr. William Shrank, from Brigham and Women’s Hospital in Boston, who worked on the study.
“Patients really need to know what their options are when picking sites where they’re going to participate.”
The social networking sites, where diabetes patients can post questions about the disease, participate in forum discussions or chat with other members, range in size from about 3,000 to more than 300,000 members, Shrank’s team found.
Site administrators usually regulate forums to make sure information is accurate, the researchers report today in Archives of Internal Medicine. Most sites don’t have doctors who are available to answer questions or give feedback on posts.
Twelve of the 15 networking sites take advertisements from companies that make diabetes drugs, devices or other products, and most are also partially or fully funded by those companies. A few sites, including www.tudiabetes.org and the American Diabetes Association (www.diabetes.org), run on volunteer donations or foundation support.
David Edelman, co-founder of Diabetes Daily (www.diabetesdaily.com), a networking site with about 65,000 members, said that his site’s membership policies require minimal information so patients can feel safe that their privacy is protected.
The site’s members and moderators are both charged with making sure product pitches don’t end up on discussion boards, and non-approved treatments can’t be mentioned by brand name anywhere on the site.
The site’s pharmaceutical ads are only for “legitimate” products, he said, while adding that any kind of sponsorship isn’t an “ideal model.”
The site takes its funding from a range of sources, including drugmakers and non-profits.
Apart from ads, Edelman told Reuters Health, “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.”
Sites that are backed by pharmaceutical or device companies, Shrank said, “may be great.” However, he added that there has been concern before about product promotion in discussions on diabetes Facebook pages, for instance.
Shrank said the researchers hope their findings will open both doctors’ and patients’ eyes to the range of social networking sites available to them, and highlight the options to consider when choosing where to share information.
He emphasized that he and his colleagues aren’t trying to say any site is better than any other.
When it comes to how much doctors or other overseers are involved in each site, “Some patients may feel comfortable in a setting where there is no health professional oversight,” Shrank told Reuters Health, if they prefer just to interact with other patients.
“Some patients may really want a health professional to answer questions.”
Edelman said that the sites are an important way for patients to “hold themselves accountable” and to get support.
“The issue is, someone goes to the doctor, and they’re there for 15 minutes, and they don’t see the doctor again for three months,” he said. “So much of diabetes success comes from what you do on a daily basis.”
SOURCE: bit.ly/fO01ME Archives of Internal Medicine, online September 26, 2011.