Multi-site research using electronic health record data: Lessons learned from a case study

Multi-site research collaboration is necessary to increase generalizability, diversity, and innovation; however, there are complexities and challenges surrounding research processes, including regulatory oversight, data management, and data sharing activities. This report highlights the specific challenges of collaborative research identified in the conduct of a federally funded multi-site study and presents lessons learned to inform ways to overcome these challenges. The purpose of our current research project is to determine how interprofessional teamwork affects quality outcomes and develop tools to improve teamwork in cancer care.

Our research team is comprised of 23 members across five academic institutions. Our study cohort includes approximately 20 000 adult patients with breast, colorectal, and non-small cell lung cancers diagnosed at the respective sites between January 1, 2016, and December 31, 2021. Electronic health record (EHR) access log data was extracted 12 months pre- and 24 months post-diagnosis for each patient, and outcome data of potentially preventable emergency department visits and unplanned hospitalizations was extracted from the California state All-Payer Claims database.

Major challenges experienced related to single institutional review board processes, establishment of contract agreements, and data management, analysis, acquisition, and transfer. Lessons learned included: (1) start research planning as early as possible, including engaging with information technology and compliance teams to identify processes and develop and share data dictionaries; (2) work closely with the institution contracting team to identify the most optimal timing and ordering for multiple data use agreement (DUA) contracts; and (3) ensure that research team members are abreast of current Health Insurance Portability and Accountability Act and institutional guidelines as they pertain to research and data practices.

Multi-site research involving big data from the EHR requires ample planning and execution time. Adopting a single standardized DUA and developing data dictionaries that can be shared for research will improve the data acquisition phase of multi-site research studies.