Surfing for valuable information: Social media and your patients

We’ve all seen this scenario in practice: A patient brings in, or refers to, a story or blog post from the Internet. Social media sites have increasingly permeated health care, as well.

There are sites where patients can post their experiences, as well as those where patients can interact with experts. In this column, I’d like to focus on websites used by patients with diabetes, such as Diabetes Daily (www.diabetesdaily.com), Patients Like Me (www.patientslikeme.com), Diabetes Mine (www.diabetesmine.com), Six Until Me (www.sixuntilme.com) and dLife (www.dlife.com).

Edward C. Chao

With such a diversity of sites, and their increasing use by patients, I’d like to examine more closely two questions:

1) Have there been studies done on diabetes social media and its use by patients?

2) Are there resources for more information about this new world, and if so, what are they?

The short answer to both is “Yes.” Therefore, I’ll outline studies that have explored the first two questions, and introduce a resource.

We all know the potential advantages, but what are some of the potential pitfalls and drawbacks of patients sharing information on these sites? Has anyone critically examined the effect of social media and a chronic illness; for instance, diabetes? Patients and their families are seeking both information and support through social network websites, but what is the risk–benefit balance between the very real need for these exchanges and privacy and accuracy concerns? Here’s a brief summary about what has been published in the nascent literature, highlighting two specific recent studies.

Data on diabetes and social media

In the first investigation of the quality of online health social network sites, Elissa Weitzman, ScD, MSc, and colleagues examined 28 indicators of safety and quality of social networks for patients with diabetes. In this observational study, a Google search of the terms “diabetes,” “social networking,” “community,” “virtual community” and “forum” was conducted. Eleven websites met the inclusion criteria: accord of scientific content with clinical practice recommendations; practices for monitoring the site for accuracy and potential conflict of interest; ease of accessing privacy policies and mitigating risks to preserving privacy; and sharing of member data.

Ten sites were examined; one closed during the time of this investigation. Two websites did not draw a clear distinction between editorial content and advertising. Nine sites permitted advertising; one featured pharmaceutical company advertising on its home page. Three sites carried advertisements touting a “cure” for diabetes. Only three sites offered users the ability to limit access to their profiles. Although eight sites contained privacy policies, none offered privacy policies that were readable at or below the eighth-grade level. The investigators said they did not contact site administrators.

A study by Brigham and Women’s Hospital, Harvard University and CVS Caremark explored websites’ oversight, whether experts take part and financing. Using Google, the investigators identified 300 online websites that had diabetes content. From that, they pared the number of sites down to 23, by excluding those that were not affiliated with academic or news institutions. The study examined 15 websites in detail. These sites had members numbering from 3,074 to more than 300,000; most had more than 10,000 members. For example, www.diabetes.org has 18,451 members and is funded by volunteer donations, as well as a foundation. Most sites were readily found through Facebook or Twitter: 80% for the former and 67% for the latter. Perhaps not entirely surprising was the finding that one in four comments was promotional, usually for products that have not been approved by the FDA. Industry advertising is permitted on 12 of the 15 sites; 50% carried advertising from pharmaceutical companies.

Reaching a better understanding

The Mayo Clinic Center for Social Media is devoted to further studying social media and health care, as well as assisting physicians and other health care professionals (socialmedia.mayoclinic.org).

The website states, “Mayo Clinic believes individuals have the right and responsibility to advocate for their own health, and that it is our responsibility to help them use social media tools to get the best information, connect with providers and with each other, and inspire healthy choices. We intend to lead the health care community in applying these revolutionary tools to spread knowledge and encourage collaboration among providers, improving health care quality everywhere.”

Offerings include an online curriculum, consulting and workshops. I’ll explore in more depth social media sites for physicians and members of the health care team in my next column.

Social media has proliferated at a rapid pace and will likely only continue to expand greatly. Although no gold standard for ascertaining the quality of social network health sites is currently available, we as endocrinologists should educate ourselves about the sites out there, so that we can, as for treatments and tests, provide reasonable guidance, insight and caveats to our patients.

Edward C. Chao, DO, is assistant clinical professor of medicine at University of California, San Diego, and staff physician at VA Medical Center, San Diego.

For more information:

• Shrank WH. Arch Intern Med. 2011;171:1589-1591.
• Weitzman ER. J Am Med Inform Assoc. 2011;18:292-297.

Disclosure: Dr. Chao reports no relevant financial disclosures.