Digital Pharma: Diabetes patients and Facebook
A quarter of comments on the 15 largest Facebook communities for diabetes patients are promotional – generally for non-FDA approved ‘natural’ products, according to a new study.
Researchers from Harvard University and Brigham and Women’s Hospital also identified incidences of marketing pitches and efforts to recruit patients for clinical trials where the true identity of the poster could not be confirmed.
But overall the study concluded there was very little evidence of dangerous, misleading, or risky self-medication behaviour being supported by the Facebook pages.
Moreover, its authors found diabetes patients were sharing valuable insights into their condition that would not typically be available to them through traditional medical channels and they also saw evidence of community-building where emotional support was abundant.
The study, Online Social Networking by Patients with Diabetes: A Qualitative Evaluation of Communication with Facebook, was sponsored by US pharmacy chain CVS Caremark and was published online last month by the Journal of General Internal Medicine.
The research is part of CVS’ three-year collaboration with Harvard University and Brigham and Women’s Hospital to research pharmacy claims data and other aspects of the patient experience to better understand patient behavior and medication adherence.
“To the best of our knowledge this is the first study to analyse in detail the quality of the information that people with diabetes are sharing with each other through Facebook,” said William Shrank, assistant professor of medicine at Harvard Medical School and senior author of the study. “There are certainly public health benefits that can be garnered from these sites – but patients and doctors need to know it is really the Wild West out there.”
“The study outlines meaningful benefits that patients may experience when participating in these sites, such as self-education, information sharing and community support. However, we also saw little quality control around promotional and data gathering activities, and patients and policy makers should take note of that.”
The nature of diabetes posts on Facebook
The study’s findings included:
• A majority of posts (66%) were from individuals describing their personal experiences with managing diabetes
• Nearly one-quarter of the posts (24%) represent sharing of personal information that is unlikely to be shared between patient and doctors, such as individuals discussing carbohydrate management in the setting of alcohol consumption
• Twenty nine percent of the posts are by diabetic patients providing emotional support to others grappling with aspects of that disease
• Thirteen percent of the posts are providing specific feedback to information requests by others in the diabetic community
• Twenty seven percent of the posts feature promotional activity and first person testimonials around non-FDA approved products and services
As one member described to a newer member of a diabetes Facebook group: “I think the internet is your best bet. The books I bought ranged from you’ll never eat normally again to your life is about to suck big time. I think you should download a diet…get together with a diabetic counselor and try this free website.”
The respondent thanked him for this advice, reported that (s)he would use the website, and further suggested the use of another downloadable iPhone application that performed calorie and exercise tracking.
Facebook study methodology
The study authors used the 15 largest Facebook groups with ‘diabetes’ in their title, though the paper doesn’t name the groups, and took the 15 most recent ‘wall posts’ from these on 8 August 2009.
To this they added the 15 most recent discussion topics from the 10 largest of the groups.
The groups ranged in size from 1,107 to 61,957 members, averaging at 9,289 participants each, and the study sample included 690 individual posts on wall pages and discussion boards written by 480 unique users.
The sample included communications that were less than one day old to posts from over a year and a half ago.
The authors do note several limitations of their study, cautioning against applying its findings to other groups for chronic diseases.
Facebook’s 500 million users do make it the world’s largest social network, but the authors also said focusing on alternative sites such as Twitter, WebMD or Myspace, might yield different results.
“Despite the limitations, these methods allowed us to access a rich source of data to analyse an otherwise elusive research subject – the information-seeking and information-sharing behaviour of chronic disease patients through social networking software.
“We find the promise of a community to support and educate others with similar conditions as well as the perils of an unregulated environment supporting substantial promotional and data-gathering activities,” the study concludes.
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