Legal and Regulatory Guidance for Racial/Ethnic Data Disaggregation in Health Data Sets

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Ignatius Bau, JD, Health Policy Consultant; Sarah Hudson Scholle, DrPh, Vice President of Research and Analytics, National Committee for Quality Assurance (NCQA); and Jennifer Park, PhD, Senior Program Officer, National Academy of Sciences will discuss the landscape of rules and regulations that provide guidance – and sometimes confusion – on the collection of racial and ethnic information in a variety of health data sources from national surveys to state health departments to hospital level data.

About the Panelists:

Ignatius Bau, JD, Health Policy Consultant
Ignatius Bau is a health equity consultant, working with state Medicaid programs, health care provider associations, consumer and community-based organizations, and foundations. He has worked as the interim executive director of the California Pan-Ethnic Health Network (CPEHN), in several positions at the Asian & Pacific Islander American Health Forum, and as a program director at The California Endowment, managing the foundation’s work on language access, cultural competency, health care disparities, health workforce diversity, and health information technology.  He has served on expert advisory groups related to health equity for the Institute of Medicine, National Quality Forum, National Committee for Assurance, Joint Commission, Institute for Healthcare Improvement, Patient-Centered Outcomes Research Institute, Families USA, federal Office of Minority Health, Office of National Coordinator for Health Information Technology, and Centers for Disease Control and Prevention, and the  California Department of Health Services. 

Sarah Hudson Scholle, DrPh, Vice President of Research and Analytics, National Committee for Quality Assurance (NCQA)
Sarah Hudson Scholle, Dr.Ph, is an expert in health services and quality measurement in multiple settings and has a demonstrated record of moving innovative concepts into implementation through NCQA’s programs and Healthcare Effectiveness Data and Information Set (HEDIS). Scholle’s expertise ranges from equity and person-centered care to delivery system improvement. Her work on equity has addressed disparities in care, methods for summarizing and incentivizing health equity, and approaches for improving data. She has conducted numerous projects to advance the use of patient-reported outcomes in clinical care and quality measurement, including a novel approach to personalized goal setting. She has also led activities in measurement related to care coordination, patient-centered care and the patient-centered medical home (PCMH) and contributed to the development and implementation of surveys.

Jennifer Park, PhD, Senior Program Officer, National Academy of Sciences
Jennifer Park, PhD, is a Study Director for the Committee on National Statistics, Division of Behavioral and Social Sciences and Education, of the National Academies of Science and Medicine. Prior to joining NAS, Park served at the United Nations Economic Commission for Europe (UNECE) in developing international standards for the Sustainable Development Goals. Prior to her detail at UNECE, Park served as senior statistician to the US Chief Statistician at the Office of Management and Budget (OMB). There, she was responsible for ensuring federal statistical standards were systematically reviewed and updated through a public, interagency process. This involvement spanned reviews of Federal Standards on the Collection and Reporting of Race and Ethnicity Data, Standard Occupational Classification, Preferred Measures of Sexual Orientation and Gender Identity, and Cognitive Interviewing Standards. She led the development and issuance of Federal Statistical Directive 1, which described the fundamental responsibilities of Federal Statistical Agencies.

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