Fundamental new opportunities for understanding and improving human health are being developed as a result of new information management capabilities. Data previously collected during clinical inpatient and outpatient care has tremendous retrospective and prospective value for planning studies, studying usage patterns, understanding comparative effectiveness, matching phenotypic and genotypic results, matching phenotypic and therapeutic approaches and much more. Our data systems are improving rapidly. Our ability to store and track medical, encounter, genome, pharmaceutic and other information and associate this information to outcomes is being created through the UF Health Integrated Data Repository (IDR). A related opportunity exists to develop processes by which patients under our care can consent to be contacted about opportunities to participate in research. The UF Consent2Share initiative was launched to develop, pilot and expand such a consent process at UF Health.
Goals and Objectives
- Develop and put in common practice appropriate consent processes by which patients can provide and remove informed consent for research contact as they wish.
- Develop and implement information systems by which consent status can be tracked and associated with research contact.
- Provide patients with an easy way to agree to be notified about future research studies for which they may be qualified.
This effort is led by Peter Iafrate, Chairman of the UF Institutional Review Board, and Gigi Lipori, Senior Director, Planning and Analysis, Shands HealthCare. Project participation includes CTSI Biorepository, CTSI Regulatory Knowledge and Research Support, Internal Medicine & Medical Specialties, UF Health Compliance and Legal, UF Health Information Technology, UF Privacy Office and others. For additional information, please contact Peter Iafrate at firstname.lastname@example.org. Project sponsors include Dr. David Nelson, Dr. Michael Conlon, and Dr. Michael Clare-Salzler.
This project creates a fundamental new capability in the clinical and translational research environment at the University of Florida. Informed consent is at the center of research participation. The UF Consent2Share project is developing a large group of potential research participants who have consented to be re-contacted for future research studies. Having this consent data available in combination with the other data in the IDR will make it much faster and more feasible to identify potentially willing research participants who meet the study criteria. Creating a consent process with tracking will create new opportunities for our ability to study and improve human health.
This process is ongoing in the Internal Medicine and Medical Specialties practices at UF Health Medical Plaza, Gainesville, Fla. Expansion of the project is expected when an electronic consent and signature process can be put in place.
- On the Same Page, Dec. 12, 2012: Our Continuously Learning Health System