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Comprehensive Otolaryngology

Challenges in Creating a Statewide Consortium for Population Research

Sunday, October 1, 2023
4:21 PM - 4:27 PM East Coast USA Time
Location: 101AB
Disclosure(s):
Kenneth W. Altman, MD PhD: No relevant relationships to disclose.
Introduction: Interinstitutional collaboration in medicine presents several unique challenges. However, the potential benefits of such large-scale collaboration are worth the challenge. Not only does the collection of interinstitutional data allow for significantly increased study population sizes, but it also increases external validity by expanding project scope beyond traditional institutional and geographical constraints. Here we present our experience and process for the creation, development, and maintenance of an otolaryngology head and neck research consortium.

Methods: The Pennsylvania Consortium on Head & Neck Cancer with Immune Disease / Suppression was first conceptualized based on a retrospective pilot project. From here we focused on several key areas: 1) the establishment of shared governance and an interinstitutional data use agreement, 2) development of a reliance agreement for central IRB reliance, 3) development of operating procedure and research infrastructure, 4) definition of a data dictionary to unify terminology and data points, 5) establishment of a secure database with interinstitutional access, and 6) formation of a formal study selection process for future consortium projects.

Results: We have identified the above six points as essential to the establishment of a functional, effective, efficient, and secure interinstitutional research consortium in the field of otolaryngology. By directly addressing these concepts we have been able to successfully create a large consortium of head and neck cancer patients across six independent academic medical centers in the state of Pennsylvania.

Conclusions: Interinstitutional collaboration is vital to research and improving patient care in many aspects of medicine. Large research consortiums have the potential to generate profoundly impactful research owing to large sample sizes across institutional and geographic boundaries. However, the field of medicine has several unique challenges. Overcoming these challenges is difficult but is possible with proper consideration and planning.