Mobilizing registry data for quality improvement: A convergent mixed-methods analysis and application to spinal cord injury

Abstract

Introduction: The rising prevalence of complex chronic conditions and growing intricacies of healthcare systems emphasizes the need for interdisciplinary partnerships to advance coordination and quality of rehabilitation care. Registry databases are increasingly used for clinical monitoring and quality improvement (QI) of health system change. Currently, it is unclear how interdisciplinary partnerships can best mobilize registry data to support QI across care settings for complex chronic conditions. Purpose: We employed spinal cord injury (SCI) as a case study of a highly disruptive and debilitating complex chronic condition, with existing registry data that is underutilized for QI. We aimed to compare and converge evidence from previous reports and multi-disciplinary experts in order to outline the major elements of a strategy to effectively mobilize registry data for QI of care for complex chronic conditions. Methods: This study used a convergent parallel-database variant mixed design, whereby findings from a systematic review and a qualitative exploration were analyzed independently and then simultaneously. The scoping review used a three-stage process to review 282 records, which resulted in 28 articles reviewed for analysis. Concurrent interviews were conducted with multidisciplinary-stakeholders, including leadership from condition-specific national registries, members of national SCI communities, leadership from SCI community organizations, and a person with lived experience of SCI. Descriptive analysis was used for the scoping review and qualitative description for stakeholder interviews. Results: There were 28 articles included in the scoping review and 11 multidisciplinary-stakeholders in the semi-structured interviews. The integration of the results allowed the identification of three key learnings to enhance the successful design and use of registry data to inform the planning and development of a QI initiative: enhance utility and reliability of registry data; form a steering committee lead by clinical champions; and design effective, feasible, and sustainable QI initiatives. Conclusion: This study highlights the importance of interdisciplinary partnerships to support QI of care for persons with complex conditions. It provides practical strategies to determine mutual priorities that promote implementation and sustained use of registry data to inform QI. Learnings from this work could enhance interdisciplinary collaboration to support QI of care for rehabilitation for persons with complex chronic conditions.