Participatory Surveillance of Hypoglycemia and Harms in an Online Social Network

Abstract

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. Design: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. Setting:The study was undertaken within the TuDiabetes.org international online diabetes social network.Participants: 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.Main Outcome Measures: 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; PϽ.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 and Relevance: 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.

The expert patient: towards a novel definition

“…Participatory studies (for example, the study by WEITZMAN et al [28], which elucidates the burden of hypoglycaemia within an online social diabetes network) are an area in which expert patients might play a specific role in the design and follow-up of investigations or trials, in close collaboration with physicians.…”

Impact of hypoglycemia on patients with type 2 diabetes mellitus and their quality of life, work productivity, and medication adherence

“…The incidence and impact of hypoglycemia can be masked by factors such as age, treatment modality, duration of diabetes, body weight, and glycemic control 4. The acute and chronic complications of hypoglycemia invariably affect various aspects of life, including work productivity, social interactions, sleep, sexual activity, driving, sport and leisure activities, and adherence to therapy 5,6. Acute symptoms can be mild (eg, palpitations, tremor, hunger, sweating) or severe (eg, behavioral changes, difficulty thinking, confusion, loss of consciousness).…”

Participatory Medicine: A Home Score for Streptococcal Pharyngitis Enabled by Real-Time Biosurveillance

“…Patient-generated data for care and research are becoming increasingly common with further penetration of consumer technology and use of patient portals, personally controlled health records, and mobile health applications (28–30). Although the GAS pharyngitis home score shows the potential value of these data, safe and effective implementation requires key logistic and workflow decisions.…”