This research coordinator will have a leadership role in two projects: 1) Implementation and oversight of an R21-funded project to investigate and improve behavioral self-management practices among adolescents with serious food allergies. 2) Support of an R01-funded project aiming to create a new framework for health information privacy that goes beyond the boundaries of information gathered in medical encounters to include individuals’ health relevant digital information collected by wearables and smart phones.
— Food allergy R-21-funded project: Severe food allergies affect 8 million children and adolescents in the United States, leading to thousands of emergency room visits annually. Adolescence is a high-risk period for adverse events, which can include anaphylaxis and even death. Despite the high (and increasing) public health burden of food allergies, there is limited behavioral science research regarding best practices for clinical and self-management.
This project will investigate behavioral self-management practices among adolescents with serious food allergies in a 2-year cohort multiple randomized controlled trial. The research coordinator will be responsible for recruitment of participants, building of study systems and interventions through the Way to Health automated research platform, study monitoring and regulatory communications with the Institutional Review Board, scheduling of team meetings, communications with collaborators at Penn and CHOP, data collection and cleaning, and analysis and reporting on this project. In this role, the research coordinator will supervise student research assistants.
Health information privacy R01-funded project: There is little available research regarding consumer and expert preferences for digital health information privacy despite the growing evidence of public concern. While there is an enormous regulatory system that protects information gathered during medical encounters, individuals’ digital health footprints, which may contain revealing health information, remain unprotected. Thus, there is a need for research to guide future policy decisions regarding digital health information privacy.
This project is a 3-year, mixed methods study that will use both surveys and interviews to gain insight into expert and consumer preferences for digital health information privacy. Project-related tasks will include conducting semi-structured interviews as well as coding qualitative data. — This is a full time, 2-year position that will require work with colleagues in the Center for Public Health Initiatives, the Department of Family Medicine and Community Health, and the Division of General Internal Medicine at the Perelman School of Medicine.
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