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.

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.

BACKGROUND: New patient-centered information technologies are needed to address risks associated with health care transitions for adolescents and young adults with diabetes, including systems that support individual and structural impediments to self- and clinical-care. METHODS: We describe the personally controlled health record (PCHR) system platform and its key structural capabilities and assess its alignment with tenets of the chronic care model (CCM) and the social-behavioral and health care ecologies within which adolescents and young adults with diabetes mature. RESULTS: Configured as Web-based platforms, PCHRs can support a new class of patient-facing applications that serve as monitoring and support systems for adolescents navigating complex social, developmental, and health care transitions. The approach can enable supportive interventions tailored to individual patient needs to boost adherence, self-management, and monitoring. CONCLUSIONS: The PCHR platform is a paradigm shift for the organization of health information systems and is consistent with the CCM and conceptualizations of patient- and family-centered care for diabetes. Advancing the approach augers well for improvement around health care transitions for youth and also requires that we address (i) structural barriers impacting diabetes care for maturing youth; (ii) challenges around health and technology literacy; (iii) privacy and confidentiality issues, including sharing of health information within family and institutional systems; and (iv) needs for evaluation around uptake, impacts, and outcomes.

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 application 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.

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.

BACKGROUND: Engaging consumers in sharing information from personally controlled health records (PCHRs) for health research may promote goals of improving care and advancing public health consistent with the federal Health Information Technology for Economic and Clinical Health (HITECH) Act. Understanding consumer willingness to share data is critical to advancing this model. OBJECTIVE: The objective was to characterize consumer willingness to share PCHR data for health research and the conditions and contexts bearing on willingness to share. METHODS: A mixed method approach integrating survey and narrative data was used. Survey data were collected about attitudes toward sharing PCHR information for health research from early adopters (n = 151) of a live PCHR populated with medical records and self-reported behavioral and social data. Data were analyzed using descriptive statistics and logistic regression to characterize willingness, conditions for sharing, and variations by sociodemographic factors. Narrative data were collected through semistructured focus group and one-on-one interviews with a separate sample of community members (n = 30) following exposure to PCHR demonstrations. Two independent analysts coded narrative data for major and minor themes using a shared rubric of a priori defined codes and an iterative inductive process. Findings were triangulated with survey results to identify patterns. RESULTS: Of PHCR users, 138 out of 151 (91%) were willing to share medical information for health research with 89 (59%) favoring an opt-in sharing model. Willingness to share was conditioned by anonymity, research use, engagement with a trusted intermediary, transparency around PCHR access and use, and payment. Consumer-determined restrictions on content and timing of sharing may be prerequisites to sharing. Select differences in support for sharing under different conditions were observed across social groups. No gender differences were observed; however differences in age, role, and self-rated health were found. For example, students were more likely than nonstudents to favor an opt-out sharing default (unadjusted odds ratio [OR] = 2.89, 95% confidence interval [CI] 1.10 - 7.62, P = .03). Participants over age 50 were less likely than younger participants to report that payment would increase willingness to share (unadjusted OR = 0.94, 95% CI 0.91 - 0.96, P < .001). Students were more likely than nonstudents to report that payment would increase their willingness to share (unadjusted OR 9.62, 95% CI 3.44 - 26.87, P < .001). Experiencing a public health emergency may increase willingness to share especially among persons over 50 (unadjusted OR 1.03, 95% CI 1.01 - 1.05, P = .02); however, students were less likely than non-students to report this attitude (unadjusted OR 0.13, 95% CI 0.05 - 0.36, P < .001). Finally, subjects with fair or poor self-rated health were less likely than those with good to excellent self-rated health to report that willingness to share would increase during a public health emergency (unadjusted OR 0.61, 95% CI 0.38 - 0.97, P = .04). CONCLUSIONS: Strong support for sharing of PCHR information for health research existed among early adopters and focus group participants, with support varying by social group under different conditions and contexts. Allowing users to select their preferred conditions for sharing may be vital to supporting sharing and fostering trust as may be development of safety monitoring mechanisms.

OBJECTIVE: The purpose of this study was to examine drinking levels, related harms, and secondhand effects of alcohol use at heavy drinking colleges between 1993 and 2005 at colleges with high levels of drinking in 1993. METHOD: Students attending 18 colleges with high levels of heavy episodic drinking (50% of students or more) from the 1993 Harvard School of Public Health College Alcohol Study were surveyed in 2005 (n = 4,518). Data collected through mailed and Web-based questionnaires were compared with responses from students at the same schools in 1993, 1997, 1999, and 2001 (N = 13,254) using time trend analyses. RESULTS: Overall, levels of alcohol consumption, experience of problems, and levels of secondhand effects remained high among students attending heavy drinking colleges. More than four of five students at these schools drank alcohol (range: 85%-88%), and more than half engaged in heavy episodic drinking (range: 53%-58%). The stability of drinking behavior occurred among subgroups of students as well. The few statistically significant changes occurred mainly between 1993 and 1997. A decline in driving after any drinking between 1997 and 2005 was observed, but no similar decline was found in two other measures of drinking and driving. CONCLUSIONS: Heavy drinking and associated problems continue unabated, with few exceptions, at colleges that are most in need of intervention: those with high levels of heavy episodic drinking. Addressing student alcohol use at heavy drinking colleges may require stronger, more consistent, and more comprehensive approaches, with increased emphasis on the alcohol environment.

OBJECTIVE: The aim of this study was to estimate, among college students ages 18-24, the numbers of alcohol-related unintentional injury deaths and other problems over the period from 1998 through 2005. METHOD: The analysis integrated data on 18- to 24-year-olds and college students from each of the following data sources: the National Highway Traffic Safety Administration Fatality Analysis Reporting System, Centers for Disease Control and Prevention Injury Mortality Data, National Coroner Studies, census and college enrollment data, the National Household Survey on Drug Use and Health, and the College Alcohol Study. RESULTS: Among college students ages 18-24, alcohol-related unintentional injury deaths increased 3% per 100,000 from 1,440 in 1998 to 1,825 in 2005. From 1999 to 2005, the proportions of college students ages 18-24 who reported consuming five or more drinks on at least one occasion in the past month increased from 41.7% to 44.7%, and the proportions who drove under the influence of alcohol in the past year increased from 26.5% to 28.9%-7% and 9% proportional increases, respectively. The increases occurred among college students ages 21-24, not 18-20. In 2001, 599,000 (10.5%) full-time 4-year college students were injured because of drinking, 696,000 (12%) were hit or assaulted by another drinking college student, and 97,000 (2%) were victims of alcohol-related sexual assault or date rape. A 2005 follow-up of students in schools with the highest proportions of heavy drinkers found no significant changes in the proportions experiencing these events. CONCLUSIONS: The persistence of college drinking problems underscores an urgent need to implement prevention and counseling approaches identified through research to reduce alcohol-related harms among college students and other young adults.

BACKGROUND: Consumer-centered health information systems that address problems related to fragmented health records and disengaged and disempowered patients are needed, as are information systems that support public health monitoring and research. Personally controlled health records (PCHRs) represent one response to these needs. PCHRs are a special class of personal health records (PHRs) distinguished by the extent to which users control record access and contents. Recently launched PCHR platforms include Google Health, Microsoft's HealthVault, and the Dossia platform, based on Indivo. OBJECTIVE: To understand the acceptability, early impacts, policy, and design requirements of PCHRs in a community-based setting. METHODS: Observational and narrative data relating to acceptability, adoption, and use of a personally controlled health record were collected and analyzed within a formative evaluation of a PCHR demonstration. Subjects were affiliates of a managed care organization run by an urban university in the northeastern United States. Data were collected using focus groups, semi-structured individual interviews, and content review of email communications. Subjects included: n = 20 administrators, clinicians, and institutional stakeholders who participated in pre-deployment group or individual interviews; n = 52 community members who participated in usability testing and/or pre-deployment piloting; and n = 250 subjects who participated in the full demonstration of which n = 81 initiated email communications to troubleshoot problems or provide feedback. All data were formatted as narrative text and coded thematically by two independent analysts using a shared rubric of a priori defined major codes. Sub-themes were identified by analysts using an iterative inductive process. Themes were reviewed within and across research activities (ie, focus group, usability testing, email content review) and triangulated to identify patterns. RESULTS: Low levels of familiarity with PCHRs were found as were high expectations for capabilities of nascent systems. Perceived value for PCHRs was highest around abilities to co-locate, view, update, and share health information with providers. Expectations were lowest for opportunities to participate in research. Early adopters perceived that PCHR benefits outweighed perceived risks, including those related to inadvertent or intentional information disclosure. Barriers and facilitators at institutional, interpersonal, and individual levels were identified. Endorsement of a dynamic platform model PCHR was evidenced by preferences for embedded searching, linking, and messaging capabilities in PCHRs; by high expectations for within-system tailored communications; and by expectation of linkages between self-report and clinical data. CONCLUSIONS: Low levels of awareness/preparedness and high expectations for PCHRs exist as a potentially problematic pairing. Educational and technical assistance for lay users and providers are critical to meet challenges related to: access to PCHRs, especially among older cohorts; workflow demands and resistance to change among providers; inadequate health and technology literacy; clarification of boundaries and responsibility for ensuring accuracy and integrity of health information across distributed data systems; and understanding confidentiality and privacy risks. Continued demonstration and evaluation of PCHRs is essential to advancing their use.

OBJECTIVE: This exploratory study examined potential mode effects (web versus U.S. mail) in a mixed mode design survey of alcohol use at eight U.S. colleges. METHODS: Randomly selected students from eight U.S. colleges were invited to participate in a self-administered survey on their alcohol use in the spring of 2002. Data were collected initially by web survey (n=2619) and non-responders to this mode were mailed a hardcopy survey (n=628). RESULTS: College students who were male, living on-campus and under 21 years of age were significantly more likely to complete the initial web survey. Multivariate analyses revealed few substantive differences between survey modality and alcohol use measures. CONCLUSIONS: The findings from this study provide preliminary evidence that web and mail surveys produce comparable estimates of alcohol use in a non-randomized mixed mode design. The results suggest that mixed mode survey designs could be effective at reaching certain college sub-populations and improving overall response rate while maintaining valid measurement of alcohol use. Web surveys are gaining popularity in survey research and more work is needed to examine whether these results can extend to web surveys generally or are specific to mixed mode designs.