Everyone has an opinion about the veracity, safety and privacy of health information on social network sites (SNS); now we have some data.
Investigators from the Children's Hospital Informatics Program evaluated the quality of health information on 10 social network sites (SNS) with an average membership of 6,707 that were organized around diabetes as the health concern. Among their findings were that only half of the SNS had content that aligned with clinical/evidence-based practice recommendations, while misinformation about a diabetes 'cure' was found on four moderated sites and three sites carried advertisements for unfounded cures (9/10 sites permitted advertising). Seven of the sites were hosted by for-profit entities and 3 belonged to professional organizations. In general, they found a high degree of variability in the quality and safety of the information provided on the sites, reports the American Medical News.
Their evaluation found privacy policies on 8/10 sites and on those sites they were within 2 clicks of the homepage. No policy was written at or below an 8th grade reading level (range 9.5.years - 18.4 years of education). The level of security to protect personal information was low - only one site used 2 of the three security indices and the rest used none or could not be determined. The security indices the researchers used were (a) privacy data storage using encrypted media, (b) data transmission through a secure socket layer, and (c) use of an external agent to audit security practices.
Overall, the results showed that the sites with the higher levels of alignment with diabetes science and clinical practice recommendations were most likely to have high levels of transparency and protection from misinformation. Only half of the sites were moderated, though this presence was not associated with less misleading information appearing on the site.
The report is valuable for, as the authors note, 47% of online adults in the US are engaging with SNS. This may be the first report to assess the quality and accuracy of the information published on these sites, as well as site privacy policies and practices.
"The phenomena [of social networking] itself in some ways is a big giant arrow pointing to some of the weaknesses, deficiencies or constraints on the traditional health care system and all its parts, whether it's patient education or advocacy or social support or effective communication" according to Elissa Weitzman, assistant professor of pediatrics at Harvard Medical School and lead author of the study that will appear in the Journal of the American Medical Informatics Association.
Based on the admittedly small sample of SNS, the authors urge patients, patient advocacy groups and medical communities to get involved with the oversight of online health communities. They recommend that sites:
• Identify where patients can get help and post guidelines for care.
• Use credentialed moderators.
• Enlist periodic external review of member discussions to protect users from misinformation and reinforce effective moderation.
• Clearly flag commercial content and commercial members.
• Ensure that privacy policies are easy to find and readable by the majority of healthcare consumers.
• Provide for member control over sharing of personal health information.
• Use industry standards to protect individual health information and sharing default settings that protect personal health information.
Thanks to Elissa Weitzman for a copy of the paper to verify and round out this report.
Image from Health Veda