Name
Hurdles and Potential Solutions to Partnerships of Health Data Utilities with Health Research
Description
Historically, HDUs have had limited contact with health research. What efforts exist rely primarily on anonymized data. Advances in identity assurance, flexible patient consent, patient access to their HDU records, more distributed clinical trials, and achievements of FHIR standards provide a path to greater participation for HDUs in research and potentially to activating additional HDU revenue streams for themselves and individual participants. How can HDUs translate these technological advances into operational capabilities?
Presentation Learning Objectives
1) What is the potential for HDUs to partner with the research community? We will explore the main research areas where HDUs could participate in and advance research.
2) How can patients be securely matched, with their consent, to research opportunities? We will provide an example – Consulti – of a successful case of consented matching and discuss ways to discover and document patients’ desired levels of participation with research.
3) How might partnership with research activities benefit HDUs. We will discuss the potential benefits for HDUs to build relationships with research activities for both the HDU mission and finances.
2) How can patients be securely matched, with their consent, to research opportunities? We will provide an example – Consulti – of a successful case of consented matching and discuss ways to discover and document patients’ desired levels of participation with research.
3) How might partnership with research activities benefit HDUs. We will discuss the potential benefits for HDUs to build relationships with research activities for both the HDU mission and finances.
Speaker Name
Mike Corrigan
Speaker Credentials
MA, Mathematics, Specialization in Computer Science, University of Michigan
Speaker Title
Co-chair, HIE Enhancement Committee
Speaker Organization
Health Record Banking Alliance
Speaker 2 Name
John Burch
Speaker 2 Credentials
BS, Chemistry, University of Kansas
Speaker 2 Title
Member, Health Record Banking Alliance
Speaker 2 Organization
Health Record Banking Alliance
Speaker 3 Name
Elizabeth Dreicer
Speaker 3 Credentials
BS
Speaker 3 Title
Co-Founder and CEO
Speaker 3 Organization
Consuli, A Public Benefit Company
Speaker 4 Name
Camille Nebeker
Speaker 4 Title
Professor of Public Health and Director, UCSD Research Ethics Program
Speaker 4 Organization
University of California San Diego