title: Participatory surveillance of hypoglycemia and harms in an online social network.
abstract: OBJECTIVE
  Surveillance systems for elucidating the burden of hypoglycemia are limited.
  
  
  OBJECTIVE
  To quantify experiences of hypoglycemia and related harms, members of an international online diabetes social network with insulin-dependent diabetes mellitus were polled through a software application ("app"). Aggregate results were returned to participants through network channels.
  
  
  METHODS
  The study period was from March 2011 through April 2012, during which time retrospective reports about experiences with hypoglycemia and related harms were collected from participants using the app.
  
  
  METHODS
  The study was undertaken within the TuDiabetes.org international online diabetes social network.
  
  
  METHODS
  Eligibility criteria included TuDiabetes membership, age 13 years or older, a self-reported diagnosis of diabetes mellitus, ability to read and write English, and Internet access. Of 2827 app users, 687 (response rate, 24.3%) opted in to the volunteer sample.
  
  
  METHODS
  Primary outcomes included the following: frequency of "going low" (having a low glucose value in the past 2 weeks) and episodes of severe hypoglycemia (in the past 12 months), and, for respondents reporting recent and/or severe hypoglycemia, lifetime experience of vehicle crashes or severe medical injury, daily debilitating worry, and withdrawal from driving, exercise, sex, and going outside of the home to avoid hypoglycemia and consequences. Secondary outcomes included measures of research engagement.
  
  
  RESULTS
  Of 613 respondents (24.3% of app users), 49.1% reported more than 4 episodes of "going low" in the past 2 weeks and 29.2% reported 1 or more severe low in the past year; 16.6% reported both more than 4 recent low episodes and 1 or more severe event in the past year. Harms were common, including daily debilitating worry (45.8%), vehicle crash or injury (15.0%), and withdrawal from exercise, driving, leaving home, and having sex (54.0%, 37.4%, 24.8%, and 22.7%, respectively). Of all respondents, 54.2% reported multiple harms, the risks for which were highest (73.7%) among respondents with a past-year severe event (odds ratio, 2.39; 95% CI, 1.60-3.58; P < .001 controlling for frequent recent low episodes and demographic and disease factors). Engagement was high, with 96.6% of the sample permitting recontact for research and 31.7% posting personal study data on their app profile page; 40.5% of 2825 unique page views of research-related materials published on the community site involved views of returned research results.
  
  
  CONCLUSIONS
  Participatory surveillance of hypoglycemia in an online diabetes social network enables characterization of patient-centered harms in a community sample and bidirectional communication with affected persons, augmenting traditional surveillance.
authors: Children’sHospital Informatics Program, One Autumn Street, Boston, MA 02215, USA. elissa.weitzman@childrens.harvard.edu
authors: Elissa R
authors: ER
authors: Weitzman
authors: Skyler
authors: S
authors: Kelemen
authors: Maryanne
authors: M
authors: Quinn
authors: Emma M
authors: EM
authors: Eggleston
authors: Kenneth D
authors: KD
authors: Mandl
mesh_terms: D000293:Adolescent; D000328:Adult; D017281:Cost of Illness; D003922:Diabetes Mellitus, Type 1 / Q000150:complications* / Q000523:psychology / Q000628:therapy; D005260:Female; D006801:Humans; D007003:Hypoglycemia / Q000150:complications / Q000209:etiology / Q000523:psychology / Q000628:therapy; D007328:Insulin / Q000627:therapeutic use; D008297:Male; D009862:Online Systems; D017063:Outcome Assessment, Health Care; D010358:Patient Participation; D011159:Population Surveillance / Q000379:methods*; D011788:Quality of Life; D018570:Risk Assessment; D012720:Severity of Illness Index; D018434:Sickness Impact Profile; D058992:Social Participation; D012944:Social Support; D014481:United States
chemical_list: D007328:Insulin