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J Am Med Inform Assoc doi:10.1136/jamia.2010.009712
  • Research and applications

Social but safe? Quality and safety of diabetes-related online social networks

  1. Kenneth D Mandl1,3,4,5
  1. 1Children's Hospital Informatics Program at the Harvard-MIT Division of Health Sciences and Technology, Children's Hospital Boston, Boston, Massachusetts, USA
  2. 2Division of Adolescent Medicine, Children's Hospital Boston, Boston, Massachusetts, USA
  3. 3Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA
  4. 4Division of Emergency Medicine, Children's Hospital Boston, Boston, Massachusetts, USA
  5. 5Manton Center for Orphan Disease Children's Hospital Boston, Boston, Massachusetts, USA
  1. Correspondence to Dr Elissa R Weitzman, Children's Hospital Informatics Program, One Autumn Street, Room 541, Boston, MA 02215, USA; elissa.weitzman{at}childrens.harvard.edu
  • Received 9 November 2010
  • Accepted 17 December 2010
  • Published Online First 24 January 2011

Abstract

Objective To foster informed decision-making about health social networking (SN) by patients and clinicians, the authors evaluated the quality/safety of SN sites' policies and practices.

Design Multisite structured observation of diabetes-focused SN sites.

Measurements 28 indicators of quality and safety covering: (1) alignment of content with diabetes science and clinical practice recommendations; (2) safety practices for auditing content, supporting transparency and moderation; (3) accessibility of privacy policies and the communication and control of privacy risks; and (4) centralized sharing of member data and member control over sharing.

Results Quality was variable across n=10 sites: 50% were aligned with diabetes science/clinical practice recommendations with gaps in medical disclaimer use (30% have) and specification of relevant glycosylated hemoglobin levels (0% have). Safety was mixed with gaps in external review approaches (20% used audits and association links) and internal review approaches (70% use moderation). Internal safety review offers limited protection: misinformation about a diabetes ‘cure’ was found on four moderated sites. Of nine sites with advertising, transparency was missing on five; ads for unfounded ‘cures’ were present on three. Technological safety was poor with almost no use of procedures for secure data storage and transmission; only three sites support member controls over personal information. Privacy policies' poor readability impedes risk communication. Only three sites (30%) demonstrated better practice.

Limitations English-language diabetes sites only.

Conclusion The quality/safety of diabetes SN is variable. Observed better practice suggests improvement is feasible. Mechanisms for improvement are recommended that engage key stakeholders to balance autonomy, community ownership, conditions for innovation, and consumer protection.

Footnotes

  • Funding National Institutes of Health; Centers for Disease Control and Prevention (CDC); National Institute on Alcohol Abuse and Alcoholism (NIAAA). This work was supported by P01HK000016 and P01HK000088-01 from the CDC, by R21 AA016638-01A1 from the NIAAA, and by 1U54RR025224-01 from NCRR/NIH.

  • Competing interests None.

  • Ethics approval This study was conducted with the approval of the Children's Hospital Boston.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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