Surveillance of an Online Social Network to Assess Population-level Diabetes Health Status and Healthcare Quality

Objective: Test a novel health monitoring approach by engaging an international online diabetes social network (SN) in consented health surveillance. Methods: Collection of structured self-reports about preventive and self-care practices and health status using a software application (“app”) that supports SN-mediated health research. Comparison of SN measures by diabetes type; and, SN with Behavioral Risk Factor Surveillance System (BRFSS) data, for US-residing insulin dependent respondents, using logistic regression. Results: Of 2,414 SN app users, 82% (n=1979) provided an A1c and 41% (n=996) completed a care survey of which 931 have diabetes. Of these: 65% and 41% were immunized against influenza and pneumonia respectively, 90% had their cholesterol checked, 82% and 66%, had their eyes and feet checked, respectively. Type 1/LADA respondents were more likely than Type 2/pre-diabetic respondents to report all five recommended practices (Adjusted OR (95% CI) 2.2 (1.5, 3.2)). Past year self-care measures were: 58% self-monitored their blood glucose (SMBG) ≥ 5 times daily, 37% saw their diabetes nutritionist, 56% saw a diabetes nurse educator, 53% saw a doctor for their diabetes ≥ 4 times. Reports of health status did not differ by diabetes type in the SN sample. The SN group was more likely than the BRFSS comparator group to use all five preventive care practices (Adjusted OR (95% CI) 1.8 (1.4, 2.1) and SMBG ≥ 5 times daily (Adjusted OR (95% CI) 10.1 (6.8, 14.9). Conclusions: Rapid assessment of diabetes care practices using a novel, SN-mediated approach can extend the capability of standard health surveillance systems

Willingness to share personal health record data for care improvement and public health: A survey of experienced personal health record users

Background: Data stored in personally controlled health records (PCHRs) may hold value for clinicians and public health entities, if patients and their families will share them. We sought to characterize consumer willingness and unwillingness (reticence) to share PCHR data across health topics, and with different stakeholders, to advance understanding of this issue. Methods: Cross-sectional 2009 Web survey of repeat PCHR users who were patients over 18 years old or parents of patients, to assess willingness to share their PCHR data with an-out-of-hospital provider to support care, and the state/local public health authority to support monitoring; the odds of reticence to share PCHR information about ten exemplary health topics were estimated using a repeated measures approach. Results: Of 261 respondents (56% response rate), more reported they would share all information with the state/local public health authority (63.3%) than with an out-of-hospital provider (54.1%) (OR 1.5, 95% CI 1.1, 1.9; p = .005); few would not share any information with these parties (respectively, 7.9% and 5.2%). For public health sharing, reticence was higher for most topics compared to contagious illness (ORs 4.9 to 1.4, all p-values < .05), and reflected concern about anonymity (47.2%), government insensitivity (41.5%), discrimination (24%). For provider sharing, reticence was higher for all topics compared to contagious illness (ORs 6.3 to 1.5, all p-values < .05), and reflected concern for relevance (52%), disclosure to insurance (47.6%) and/or family (20.5%). Conclusions: Pediatric patients and their families are often willing to share electronic health information to support health improvement, but remain cautious. Robust trust models for PCHR sharing are needed

Sharing Data for Public Health Research by Members of an International Online Diabetes Social Network

Background: Surveillance and response to diabetes may be accelerated through engaging online diabetes social networks (SNs) in consented research. We tested the willingness of an online diabetes community to share data for public health research by providing members with a privacy-preserving social networking software application for rapid temporal-geographic surveillance of glycemic control. Methods and Findings: SN-mediated collection of cross-sectional, member-reported data from an international online diabetes SN entered into a software applicaction we made available in a “Facebook-like” environment to enable reporting, charting and optional sharing of recent hemoglobin A1c values through a geographic display. Self-enrollment by 17% (n = 1,136) of n = 6,500 active members representing 32 countries and 50 US states. Data were current with 83.1% of most recent A1c values reported obtained within the past 90 days. Sharing was high with 81.4% of users permitting data donation to the community display. 34.1% of users also displayed their A1cs on their SN profile page. Users selecting the most permissive sharing options had a lower average A1c (6.8%) than users not sharing with the community (7.1%, p = .038). 95% of users permitted re-contact. Unadjusted aggregate A1c reported by US users closely resembled aggregate 2007–2008 NHANES estimates (respectively, 6.9% and 6.9%, p = 0.85). Conclusions: Success within an early adopter community demonstrates that online SNs may comprise efficient platforms for bidirectional communication with and data acquisition from disease populations. Advancing this model for cohort and translational science and for use as a complementary surveillance approach will require understanding of inherent selection and publication (sharing) biases in the data and a technology model that supports autonomy, anonymity and privacy.Centers for Disease Control and Prevention (U.S.) (P01HK000088-01)Centers for Disease Control and Prevention (U.S.) (P01HK000016 )National Institute of Alcohol Abuse and Alcoholism (U.S.) (R21 AA016638-01A1)National Center for Research Resources (U.S.) (1U54RR025224-01)Children's Hospital (Boston, Mass.) (Program for Patient Safety and Quality

A Screening Tool for Assessing Alcohol Use Risk among Medically Vulnerable Youth

Background: In an effort to reduce barriers to screening for alcohol use in pediatric primary care, the National Institute on Alcoholism and Alcohol Abuse (NIAAA) developed a two-question Youth Alcohol Screening Tool derived from population-based survey data. It is unknown whether this screening tool, designed for use with general populations, accurately identifies risk among youth with chronic medical conditions (YCMC). This growing population, which comprises nearly one in four youth in the US, faces a unique constellation of drinking-related risks. Method To validate the NIAAA Youth Alcohol Screening Tool in a population of YCMC, we performed a cross-sectional validation study with a sample of 388 youth ages 9–18 years presenting for routine subspecialty care at a large children’s hospital for type 1 diabetes, persistent asthma, cystic fibrosis, inflammatory bowel disease, or juvenile idiopathic arthritis. Participants self-administered the NIAAA Youth Alcohol Screening Tool and the Diagnostic Interview Schedule for Children as a criterion standard measure of alcohol use disorders (AUD). Receiver operating curve analysis was used to determine cut points for identifying youth at moderate and highest risk for an AUD. Results: Nearly one third of participants (n = 118; 30.4%) reported alcohol use in the past year; 86.4% (106) of past year drinkers did not endorse any AUD criteria, 6.8% (n = 8) of drinkers endorsed a single criterion, and 6.8% of drinkers met criteria for an AUD. Using the NIAAA tool, optimal cut points found to identify youth at moderate and highest risk for an AUD were ≥ 6 and ≥12 drinking days in the past year, respectively. Conclusions: The NIAAA Youth Alcohol Screening Tool is highly efficient for detecting alcohol use and discriminating disordered use among YCMC. This brief screen appears feasible for use in specialty care to ascertain alcohol-related risk that may impact adversely on health status and disease management

Advancing Surveillance of Chronic and Non-Communicable Disease - Path Forward

Non-communicable diseases are a major and growing morbidity and mortality burden globally. This roundtable session will discuss key terms and definitions, formulate a rationale for the surveillance of non-communicable diseases and attempt to elicit participant's experiences in the surveillance of these conditions. It will discuss where and how existing surveillance efforts may be exploited in non-communicable disease surveillance and where unique surveillance methods may be needed to establish cost-effective and sustainable methods for longitudinal tracking of non-communicable diseases