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

Online information and support needs of women with advanced breast cancer: A qualitative analysis

Purpose: Women with advanced breast cancer (ABC) face significant adjustment challenges, yet few resources provide them with information and support, and attendance barriers can preclude access to face to face psychosocial support. This paper reports on two qualitative studies examining (i) whether information and support-seeking preferences of women with ABC could be addressed in an online intervention, and (ii) how an existing intervention for patients with early stage cancer could be adapted for women with ABC. Methods: Women with ABC participated in telephone interviews about their information and support- seeking preferences (N = 21) and evaluated an online intervention focused on early-stage cancer (N = 15). Interviews were transcribed and underwent thematic analysis using the framework method to identify salient themes. Results: Participants most commonly sought medical, lifestyle-related, and practical information/support; however, when presented with an online intervention, participants most commonly gave positive feedback on content on coping with emotional distress. Difficulty finding information and barriers to using common sources of information/support including health professionals, family and friends, and peers were reported; however, some women also reported not wanting information or support. All participants evaluating the existing intervention gave positive feedback on various components, with results suggesting an online intervention could be an effective means of providing information/support to women with ABC, given improved specificity/relevance to ABC and increased tailoring to individuals circumstances and preferences. Conclusions: Adaptation of an existing online intervention for early stage cancer appears a promising avenue to address the information and support needs of women with ABC

Engagement with a Social Networking Intervention for Cancer-Related Distress

BACKGROUND: Understanding patterns and predictors of engagement could improve the efficacy of Internet interventions. PURPOSE: The purpose of the study was to characterize engagement in a multi-component Internet intervention for cancer survivors with distress. METHODS: Data were derived from 296 cancer survivors provided with access to the Internet intervention and included self-report measures and directly-measured engagement with each component of the intervention. RESULTS: Over 12 weeks, average total engagement was 7.3 h (sd=11.7), and 42% of participants spent >3 h on the website. Participants spent more time using social networking components than structured intervention content. Greater early and total engagement was associated with previous chemotherapy, being female, and being recruited via the Internet. Early engagement was associated with greater fatigue and more social constraints. CONCLUSIONS: For many users, engagement with an Internet intervention was quite high. Reducing attrition and tailoring content to better meet the needs of those who do not engage should be a focus of future efforts