Building Data Registries with Privacy and Confidentiality for PCOR

Li Xiong is an Associate Professor in the Department of Mathematics and Computer Science and the Department of Biomedical Informatics at Emory University where she directs the Assured Information Management and Sharing (AIMS) research group. She holds a PhD from Georgia Institute of Technology, an MS from Johns Hopkins University, and a BS from University of Science and Technology of China, all in Computer Science. She also worked as a software engineer in IT industry for several years prior to pursuing her doctorate. Her areas of research are in data privacy and security, distributed and spatio-temporal data management, and health informatics. She is a recent recipient of the Career Enhancement Fellowship by Woodrow Wilson Foundation, a Cisco Research Award, and an IBM Faculty Innovation Award. Her current research is supported by NSF, AFOSR, NIH, and PCORI.

Dr. Post received his MD from the University of Pennsylvania in 1999, an MS in Information Science from the University of Pittsburgh in 2001 and his PhD in Biomedical Informatics from the University of Pittsburgh in 2006. While at Pittsburgh, he completed a National Library of Medicine (NLM) Fellowship in Biomedical Informatics. Dr. Post works closely with Emory Healthcare in providing clinical informatics expertise in information systems and quality improvement projects, in particular, analytics and information system support for hospital discharge planning. He leads the development of the Analytic Information Warehouse (AIW), which aims to develop predictive tools for readmissions and other adverse outcomes and complications in targeted patient populations including heart failure and transplant.

Dr. Long is an Associate Professor in the department of Biostatistics and Bioinformatics at Emory University. He received his PhD in Biostatisticsfrom the University of Michigan in 2005. His research interests in statistical methodology include high-dimensional data analysis (with application to omics data and electronic health records data); missing data; causal inference; Bayesian methods and modeling; functional data analysis; prediction models; clinical trial conduct, design, and monitoring; and nonparametric and semiparametric methods. His research interests in subject-matter applications include cancer; cardiovascular diseases; cystic fibrosis; diabetes; mental health; and stroke.

Dr. Xiaoqian is an Assistant Professor in the Division of Biomedical Informatics at University of California at San Diego. He received his PhD in computer science in Carnegie Mellon University. His interests focus on health privacy and predictive modeling.

Katherine Kim is an assistant professor at the Betty Irene Moore School of Nursing at UC Davis. Her research focuses on information technology to improve community health, care coordination and clinical research. Kim has led research projects using participatory methods to design, implement and evaluate mobile and social technology-enabled health interventions and distributed research networks. Her areas of clinical interest include cancer, obesity, heart disease and other chronic conditions.

Pam Dixon is the founder and executive director of the World Privacy Forum, a US-based public interest research group well-known and respected for its consumer privacy research. An author and a researcher, Dixon has written eight books and groundbreaking and influential studies in the area of privacy, including The Scoring of America, a substantive report on predictive analytics, big data, and privacy. She has also written widely cited reports on health privacy, including the first major Medical Identity Theft report to be published as well as the Patient’s Guide to HIPAA and others. Dixon has testified before the US Congress, including the Senate Judiciary Committee, as well as the US Federal Trade Commission, the FDA, and other agencies on prominent consumer privacy issues, including issues related to data brokers, big data, health privacy, financial privacy and credit scoring, genetic privacy, the Common Rule, facial recognition, and online and offline privacy. Dixon is an expert advisor to the OECD as part of an advisory group on health data privacy. She was appointed by the California Secretary of State as co-chair of the California Privacy and Security Advisory Board, where she served for two years. Dixon was formerly a research fellow with the Privacy Foundation at Denver University's Sturm School of Law. She has written 8 books, including titles for Random House / Times Books, among other major publishers. Her most recent book, Online Privacy, co-authored with frequent collaborator Bob Gellman, was published by ABC-CLIO books. Forthcoming in 2016 is a reference volume she edited on surveillance, to be published by ABC-CLIO books in hardcover and digital formats.

Christin serves as the Privacy Officer for Emory University, and works closely with researchers, IT team members and the IRB to determine how to facilitate clinical research using identifiable health information, while safeguarding the privacy rights of individuals. Assuring research participants that their most private information will be protected and used appropriately, and making sure that they are fully informed about how their information will be used and associated risks is one of the most important aspects of my work.

Kalichman has worked in the domain of research ethics for 25 years. He leads NIH- and NSF-funded research on goals, content, and methods for teaching research ethics, and has taught train-the-trainer, research ethics workshops throughout the U.S., and in Central America, Europe, Africa, the Middle East and Asia. Kalichman is founding director of the UCSD Research Ethics Program (http://ethics.ucsd.edu) and the San Diego Research Ethics Consortium (http://sdrec.ucsd.edu), and co-founding director for the Center for Ethics in Science and Technology (http://ethicscenter.net). He continues to maintain one of the first online resources, since 1999, for the teaching of research ethics (http://research-ethics.net). Kalichman is also co-principal investigator on an NIH-funded project to align research methods with public perceptions and preferences regarding privacy in the context of HIV sequencing research.

Dr. Robert is a faculty member within the Divisions of Biomedical Informatics and Hospital Medicine at the University of California at San Diego. He is a practicing hospitalist and his main interests include clinical informatics, quality improvement and the use of electronic data to identify and prevent diagnosis errors in healthcare. His current projects involve improved laboratory utilization, medication reconciliation and the use of health information technology to improve the feedback that physicians receive regarding their diagnostic decisions. Dr. El-Kareh completed his residency in Internal Medicine at Brown University, followed by a National Library of Medicine informatics research fellowship at Brigham and Women’s Hospital.

Cynthia works as an attorney in the motion picture industry and currently serve as Senior Counsel at Metro-Goldwyn-Mayer Studios, Beverly Hills, CA. For the last decade, she has served as an internet message board moderator and Chair of the Board of Directors of a national patient advocacy group for patients with a hereditary heart condition. Through her work with this organization, she became interested and involved in the areas of patient privacy and medical research and was often called upon to make policy decisions relating to these areas.

Gordon is a biology professor at University of South Florida. His interest stems from being a patient with hypertrophic cardiomyopathy, and he is a moderator of the discussion board for the Hypertrophic Cardiomyopathy Association. Much of his work in this role is helping patients understand the biology underlying the disease and its genetics.

Carly Medosch is an Independent Chronic Illness Advocate. Her strongest professional credential is her 21 years experience as a chronic illness patient. She earned an undergraduate degree in art and design, and a Masters degree in business. Carly is particularly interested in health technology, and believes in the importance of patient inclusion in all aspects of health care. She is an occasional writer and speaker.

Barbara Saltzman is a registered nurse and attorney with current licenses in California. She has worked in Illinois, Texas, Louisiana, and California for federal, state, county, and private health care providers. Her interests in bioethics and mental health law prompted her to study law. Her last position was as a Patients Rights Advocate for the County of Los Angeles Department of Mental Health. She continues to provide volunteer patient advocacy for family and friends, while reading various publications to keep current on medical research and privacy issues.