General characteristics of diabetes-related online SN sites
Eleven sites met the study inclusion criteria. One closed during the review period and was excluded from the report for incomplete information. Sites have founding dates between 2001 and 2008. All address multiple diabetes subtypes (ie, Type 1, Type 1.5, Type 2, prediabetes, and gestational diabetes). All target adults, and one focuses on youth ages 13 and older and their adult care givers. The average community membership was n=6707. Member activity varied within a series of randomly monitored 24 h periods: four sites published over 100 new messages per 24 h period, while two sites were minimally active and published fewer than five new messages in that time. The level of site activity and membership size were not correlated. Seven sites were for profit. Three sites belonged to a professional association or organization. Across sites, several types of promotions were available to members, including coupons for diabetes supplies (four sites), information about clinical trials (five sites), and information about diabetes-related events (seven sites).
Alignment of site content with diabetes science and clinical practice recommendations
Across sites, there was a bimodal pattern of alignment of site content with diabetes science and CPRs, reported in . Five sites had alignment indices with values in the top third of the nine-point scale, and three sites had values in the bottom third of the scale. Where a mixed pattern was evident (sites G, H, I), no clear pattern was present. Across sites, the lowest areas of alignment were for presence of a medical disclaimer or reminder to discuss care with a provider which was present on three sites; and publication on site of a definition of A1c, present on five sites, of which none defined A1c levels according to standards for effective disease management. Four sites provided recommendations for all six CPRs assessed; three sites had no information on these CPRs.
Alignment of centralized content with diabetes science and clinical practice recommendations
Safety of diabetes SN sites
A bimodal pattern was observed for safety practices (); three sites' safety index values fell in the top third of the 10-point scale, and the remainder fell in or near the bottom third. With respect to external checks on the quality of published editorial content, two sites indicated that they subscribe to an outside agency that audits site content by ensuring content is sourced; however, the accuracy of published information was not verified under that service. Five sites publish a link to an outside diabetes organization on the home page, which may facilitate members' access to formally vetted diabetes information or guidelines. Internal checks on user-generated or member content through lay- or professional moderation were suggested in seven sites. Specific information about numbers or credentials of moderators was available for three of these sites. One site indicated use of professionally accredited moderation (ie, moderator has professional grounding in diabetes clinical science, nutrition, nursing, other). Member-posted misinformation about a cure for diabetes was found on six sites; four of these were moderated sites. Four sites were free of member-posted misinformation about a cure, of which three were moderated sites. Nine sites allowed advertising. One site had pharmaceutical advertising on its home page. Four sites clearly distinguished advertising from editorial content, and six sites were free of deceptive advertising about a ‘cure.’ Sites A, D, and H were identified as better-practice sites; they had transparency of content and no pharmaceutical advertising on their home page or deceptive advertising. Two sites lacked a clear distinction between advertising and editorial content and had advertisements promoting a ‘cure’ for diabetes.
Safety practices for auditing content and supporting transparency and moderation of content
Characteristics of privacy policies governing diabetes SN sites
Accessibility of privacy policies and the communication and control of privacy risks
Practices for protecting privacy of member data
Centralized sharing of member data and member control over sharing
Consistency of better practice
Across-site analysis of each of the four quality domains showed a clustering of better practice at three sites (A, D, and H) and is reported in . Within the observed range of site quality measures, sites that have high levels of alignment with diabetes science and clinical practice recommendations also have high levels of content safety, transparency, and protection from misinformation. None of the sites was completely aligned with diabetes science or published information on all six CPRs assessed, few used standard technical tools to protect personal information, and communication of risk and transparency of advertising were weak.
Composite quality and safety index.