The goal of our project is to assess the feasibility of collecting behavioral self-report data about alcohol and tobacco use using surveys embedded in personally controlled health records (PCHR). A Federal initiative to advance personal health records has begun at the level of the Secretary of HHS. It presents an outstanding opportunity for developing new systems and tools for data collection and for exploring models for integrating behavioral reporting systems with health promotion and surveillance. As development, diffusion and adoption of PCHR technologies progress, it is critical to study their use and provide a 'proof-of-concept' for using them to collect a range of social and behavioral data for individual and population level research. This may be especially relevant to collecting data about sensitive health behaviors such as alcohol and tobacco use. A full- service medical provider (n=25,000 patients) has agreed to promote the INDIVO (formerly PING) PCHR to its members for this study and provide us with access to community and clinical data for validity testing. We will capitalize on this opportunity to address to specific aims: 1) To ascertain whether HMO members will participate in a system for electronic personally controlled health records and use this system to report about their health behaviors; and, 2) To ascertain whether patients will consent to share their identified personal health data with providers and their de-identified data with public health authorities for the purpose of coordinated care and public health surveillance. We will use descriptive and multivariate statistics to analyze the data, conducting a comprehensive study of participation and use of the system, consent for data sharing, paying special attention to the degree to which social, demographic and """"""""digital divide"""""""" factors affect participation, and exploring how selection and participation biases related to social, demographic, knowledge- attitude-belief factors of subjects differ across health behavior areas. Learning more about these issues is essential to understanding the utility of these systems for research. ? ? ?

Agency
National Institute of Health (NIH)
Institute
National Institute on Alcohol Abuse and Alcoholism (NIAAA)
Type
Exploratory/Developmental Grants (R21)
Project #
5R21AA016638-02
Application #
7504051
Study Section
Health Services Organization and Delivery Study Section (HSOD)
Program Officer
Breslow, Rosalind
Project Start
2007-09-30
Project End
2010-08-31
Budget Start
2008-09-01
Budget End
2010-08-31
Support Year
2
Fiscal Year
2008
Total Cost
$200,688
Indirect Cost
Name
Children's Hospital Boston
Department
Type
DUNS #
076593722
City
Boston
State
MA
Country
United States
Zip Code
02115
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Weitzman, Elissa R; Cole, Emily; Kaci, Liljana et al. (2011) Social but safe? Quality and safety of diabetes-related online social networks. J Am Med Inform Assoc 18:292-7
Weitzman, Elissa R; Kaci, Liljana; Quinn, Maryanne et al. (2011) Helping high-risk youth move through high-risk periods: personally controlled health records for improving social and health care transitions. J Diabetes Sci Technol 5:47-54
Weitzman, Elissa R; Adida, Ben; Kelemen, Skyler et al. (2011) Sharing data for public health research by members of an international online diabetes social network. PLoS One 6:e19256
Weitzman, Elissa R; Kaci, Liljana; Mandl, Kenneth D (2010) Sharing medical data for health research: the early personal health record experience. J Med Internet Res 12:e14
Weitzman, Elissa R; Kaci, Liljana; Mandl, Kenneth D (2009) Acceptability of a personally controlled health record in a community-based setting: implications for policy and design. J Med Internet Res 11:e14
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