Lived Experience and Data Management: Trauma-Informed Approaches and Perspectives

Federally Qualified Health Centers (FQHCs) manage large amounts of data collected about patients and services. The data collected is used routinely to inform healthcare providers and FQHC organizational leadership about patient outcomes and health center performance. Health center patients are asked to complete and repeat paperwork, surveys, and assessments at their first and subsequent visits. It has been reported by some patients and providers that the repetition of collecting the same data points can be discouraging and appear as though the routine of data collection outweighs the patients’ needs and undervalues their experiences. In some cases, repeating one’s entire medical, housing, and personal histories can even create harm and retraumatization for patients and providers alike.

This publication will explore why and how lived expertise must be sought and valued by health centers and allied organizations to improve every stage of the data management process from collection and analysis to data sharing, access, and decision-making. Additionally, we will discuss the nexus of racial equity and lived expertise in data management, and how data used improperly or carelessly have the potential to both harm and help perpetuate inequities. Finally, we provide recommendations and practices that can be implemented in the short, medium, and long term to use data to reduce the chances of re-traumatization.

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