BackgroundData 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.MethodsCross-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.ResultsOf 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%).ConclusionsPediatric 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.

BackgroundSurveillance 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 FindingsSN-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).ConclusionsSuccess 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.

WHAT'S KNOWN ON THIS SUBJECT:The population of youth with chronic medical conditions is growing and many attend college. Yet we know little about US colleges' capacity to identify and care for these youth, nor how transition guidelines and financing models should incorporate college health. WHAT THIS STUDY ADDS:This is the first study to find that although many colleges can provide some clinical care for youth with chronic conditions, few colleges have systems to identify and track these students, elucidating gaps that pediatricians and institutions need to address. abstract BACKGROUND AND OBJECTIVE: Twenty percent of US youth have a chronic medical condition and many attend college. Guidelines for transition from pediatric to adult care do not address college health services, and little is known about their capacity to identify, support, and provide care for these youth. The objective of this study was to describe college health center policies, practices, and resources for youth with chronic medical conditions (YCMC). METHODS: Survey of medical directors from health centers of a representative sample of 200 4-year US colleges with $400 enrolled undergraduate students. Patterns of identification, management, and support for youth with a general chronic medical condition and with asthma, diabetes, and depression, were investigated; x 2 and Fisher exact tests were used to ascertain differences by institutional demographics. RESULTS: Directors at 153 institutions completed the survey (76.5% response rate). Overall, 42% of schools had no system to identify YCMC. However, almost a third (31%) did identify and add to a registry of incoming YCMC on review of medical history, more likely in private (P , .001) and small (,5000 students, P = .002) colleges; 24% of health centers contacted YCMC to check-in/make initial appointments. Most institutions could manage asthma and depression (83% and 69%, respectively); 51% could manage diabetes on campus.CONCLUSIONS: Relatively few US colleges have health systems to identify and contact YCMC, although many centers have capacity to provide primary care and management of some conditions. Guidelines for transition should address policy and practices for pediatricians and colleges to enhance comanagement of affected youth. Dr Lemly designed the study along with Dr Weitzman, supervised data collection and analyses, and drafted the initial manuscript; Ms Lawlor carried out the data collection and reviewed the manuscript; Dr Scherer performed the analyses and reviewed and revised the manuscript; Ms Kelemen carried out initial study design and supervised data collection, and reviewed the manuscript; Dr Weitzman conceptualized and designed the study, supervised data collection and analyses, and reviewed and revised the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.www.pediatrics.org/cgi

Health care transition (HCT) from pediatric to adult-focused systems is a key milestone for youth. Developing self-care skills and HCT planning are key elements. In a survey at 4 pediatric specialty clinics to 79 youth aged 16 to 25 years and 52 parents, skill-based HCT readiness was assessed using the Transition Readiness Assessment Questionnaire (TRAQ). Multivariable logistic regression evaluated the association between TRAQ scores and self-care beliefs. In all, 70% of youth and 67% of parents believed that they/their child could manage their care. Only 38% of youth and 53% of parents reported thinking about HCT; only 18% of youth and 27% of parents reported having a HCT plan. Youth with higher TRAQ scores were more likely to believe they could manage their care, controlling for age and gender (adjusted odds ratio = 4.0, 95% confidence interval = 1.7–9.5). Transition readiness skills are associated with self-care beliefs. However, a mismatch exists between high reported self-care beliefs and low levels of transition planning.