Through the IDR’s research data request process, research teams partner with an IDR Honest Broker analyst who is approved by the UF Privacy Office and IRB to release detailed patient data for research purposes. This process begins with a consultation and then submission of a research data request. Often, by consulting with an IDR team member BEFORE obtaining IRB approval, research teams can avoid IRB amendments.
Making Research Data Collection More Efficient: With IRB approval, research teams can work closely with an IDR analyst to obtain datasets with rich details about patients and patient care. Often, this service can help researchers avoid or reduce labor-intensive chart review. Even in cases where chart review is unavoidable (due to unstructured data needs), the IDR team can apply inclusion and exclusion criteria and give researchers a list of patients who qualify for chart review.
- There is no Easy Button we’re working on it, but putting together research-useful data from an operational healthcare system, while ensuring compliance with HIPAA and IRB regulations, isn’t easy. So, research teams should expect IDR analysts to ask questions, including about budgets. This ensures researchers get useful data and avoids re-work, IRB deviations, and budget overruns. For studies that require support beyond two hours, the IDR team charges a $90 hourly rate. IDR team members can discuss potential funding options for projects without grant funding or other financial support.
- But wait… Sometimes IRB approval and Funding is not Needed
An exciting variation on the IDR’s process of providing customized datasets for every research team is the creation and dissemination of re-usable de-identified datasets.
De-identified datasets: For example, shortly after the COVID-19 pandemic began, the IDR team created a de-identified COVID-19 Patient Dataset that is freely available to UF and UF Health researchers. This dataset is updated regularly, free of charge, and approved by the IRB for sharing without requiring individual research teams to obtain study-specific IRB approval.