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Investigating Values in Personal Health Data Governance Models
|Title:||Investigating Values in Personal Health Data Governance Models|
|Authors:||Winter, Jenifer Sunrise|
|Keywords:||personal health data|
|Date Issued:||Aug 2017|
|Citation:||Winter, J. S., & Davidson, E. (2017). “Investigating values in personal health data governance models.” 23rd Americas Conference on Information Systems (AMCIS). August 2017, Boston, MA.|
|Abstract:||In this paper, we seek to deepen discourse on health data governance beyond the important issues of privacy and data security to consider what types of value are potentially afforded by personal health information (PHI) data and, importantly, whose values and interests shape governance structures and goals toward realizing value. We conducted a discourse analysis of texts addressing PHI data use and governance. Through analysis of a broad array of documents using qualitative analysis and guided text mining, we identified six overlapping, but distinctive, models for PHI governance. Each model presents an array of stakeholders, value to be realized from analysis, assumed stewardship roles, and governance structures and goals. This analysis extends consideration of widely shared governance goals, highlighting possible issues and conflicts among actors’ values and interests, particularly when data “slip” between governing models. We consider policy implications and areas of future research from this analysis.|
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