Anita L. Allen
Deputy Dean and Henry R. Silverman Professor of Law,Professor of Philosophy at the University of Pennsylvania Law School,and member of the President’s Council on Bioethics
Anita L. Allen is the Henry R. Silverman Professor of Law and Professor of Philosophy at the University of Pennsylvania, where she is also Deputy Dean for Academic Affairs of the law school. In 2010 she was appointed by President Obama to the Presidential Commission for the Study of Bioethical Issues. She is an expert on privacy law, ethics, and contemporary values, and is recognized for her scholarship about legal philosophy, women's rights, and race relations. She holds a JD law degree from Harvard and a PhD from the University of Michigan. She is the author of more than a hundred articles. Her books include, Unpopular Privacy: What Must We Hide? (2011), Privacy Law and Society (2011), The New Ethics: A Guided Tour of the 21st Century Moral Landscape (2004), Why Privacy Isn't Everything: Feminist Reflections on Accountability for Private Life (2003), and Uneasy Access: Privacy for Women in a Free Society (1988).
Chair of the Foundation for Information Policy Research andProfessor of Security Engineering at Cambridge University
You can view more about Ross Anderson at his University of Cambridge homepage here: http://www.cl.cam.ac.uk/~rja14/.
Assistant Attorney General, the State of Vermont
Bridget Asay is an assistant attorney general for Vermont. She directs the civil appellate practice for the Vermont Attorney General's Office. She also chairs the Vermont Board of Bar Examiners and serves on the Vermont Bar Association's Roundtable on the Profession. Before joining the Attorney General's Office in 1998, she clerked for Vermont Supreme Court Justice Denise Johnson and for Judge J. Garvan Murtha, chief judge of the federal district court in Vermont. She is a 1995 graduate of Yale Law School.
Senator Nancy Barto
State Senator, Arizona
Nancy Barto was elected to the Arizona State Senate in 2010 having served in the Arizona House of Representatives since 2006. She represents the 7th Legislative District, which encompasses diverse populations in Northeast Phoenix, Scottsdale, Cave Creek and Carefree.
Nancy has successfully sponsored major health care reforms aimed at increasing affordable health insurance options, and protecting patients’ fundamental privacy rights. Recognized as a consistent leader for Arizona families, Nancy has championed important medical tort, property tax and homeowner reforms and been a voice for reform in Arizona’s foster care and behavioral health systems.
Service and recognition:
Born in Chicago, Illinois, Nancy and her parents relocated to Phoenix in 1962. She studied Vocal Performance and Elementary Education at Arizona State University and A.S.U. West and prior to public service enjoyed a career as a mother and public policy advocate for family issues.
- Senate Healthcare and Medical Liability Reform Committee, Chairman
- House Health and Human Services Committee, former Chairman
- Maricopa County Commission of Justice System Intervention for the Seriously Mentally Ill
- Project 127, Supporting Foster and Adoptive Parents
- Arizona Bio-Industry Association, 2009 Public Service Award
- Arizona Family Project, 2006-2007 Friend of the Family
- Northern Arizona University Interdisciplinary Health Policy Institute Advisory Board
She and her husband, Joe, have been married 32 years. Together they have three daughters, and two grandchildren. She enjoys hiking, the arts, and being with the grandkids.
Legislative website: www.azleg.gov
Assistant Professor, University of Texas at Austin
I'm an assistant professor of mathematics at UT-Austin. My primary research focus is algebraic topology, but I've worked on the design of practical privacy-preserving systems for locational privacy and have extensive experience as a software engineer. I've become involved in technology questions surrounding electronic health records more recently, as part of work with PPR.
Sid Richardson Fellow and Lecturer at LBJ School of Public Affairs, UT Austin
Benedicte Callan joined the LBJ of Public Affairs research team as a Sid Richardson Fellow for innovation and health policy and as a research affiliate of the Center for Health and Social Policy (CHASP) in the fall of 2009. The Center for Health and Social Policy (CHASP) at the Lyndon B. Johnson School of Public Affairs, The University of Texas at Austin, addresses health and social policy concerns by conducting policy research, educating students and practitioners to become future leaders, and providing a forum for debate and dialogue among today’s foremost policymakers and scholars about critical health and social policy issues. At the LBJ School, Dr. Callan teaches an introductory course on Science and Technology Policy and a course on Health and Innovation Policy.
Previously, Dr. Callan worked for 12 years at the Organization of Economic Cooperation and Development (OECD) where she served in a number of capacities, most recently as Head of the Biotechnology Unit which focuses on the development and diffusion of innovative biotechnologies in a broad range of industrial sectors. She has also been Principal Administrator for Health, Executive Assistant to the Deputy Secretary General charged with overseeing OECD work on development and the environment, and an Administrator for science and technology policy. At the OECD, Dr. Callan’s responsibilities included the delivery of policy documents that represented international consensus on good practice in a broad range of science, innovation and economic policy issues. Callan’s most recent publications focus on health and innovation policy in OECD countries and on challenges to meeting global health goals. Over 2009-2010, her work focused on policies that support the creation of knowledge networks and markets for different sorts of biomedical samples and data. Prior to the OECD, Callan was a Fellow for Political Economy at the Council on Foreign Relations in New York. Callan received her PhD from the University of California-Berkley in Political Science in 1995 and her BA from Yale University in Biology and East Asian Studies.
Senior Public Policy Counsel, New York Civil Liberties Union
Prior to joining the NYCLU, Corinne Carey was a researcher with the U.S. Program at Human Rights Watch, where she produced reports and engaged in advocacy on domestic human rights issues including the rights of people with criminal records, sex offender registration and community notification laws, and the evacuation of correctional facilities during Hurricane Katrina.
Carey graduated summa cum laude from the State University of New York at Buffalo School of Law. She began her legal career with a fellowship from the Open Society Institute as the founder and director of the Harm Reduction Law Project, based in the Lower East Side Harm Reduction Program in New York City. She provided direct legal services to drug users in harm reduction programs throughout the city.
A longtime drug law reform and harm reduction advocate, Carey was a founding member of Prevention Point Philadelphia, that city's first needle exchange program. She serves on the board of directors of National Advocates for Pregnant Women, and has spoken about the rights of drug users to local, national and international audiences. She has also taught courses in law and urban problems and civil rights and civil liberties at New York University and Brooklyn College.
Former Chairman of the Board of the HIMSS, Imprivata
Barry P. Chaiken, MD, MPH, FHIMSS has over 20 years experience in healthcare information technology, patient safety, clinical transformation, and public health. During his career, he worked with the National Institutes of Health, U.K’s. National Health Service, McKesson, and BearingPoint.
Over the past 15 years Chaiken provided expertise in quality and patient safety to provider and payor organizations helping them utilize information technology to improve clinical and administrative activities. He has served as guest lecturer and consultant on topics including patient safety, clinician adoption of information technology, quality improvement and the patient centered medical home.
Chaiken is board certified in General Preventive Medicine and Public Health as well as Health Care Quality Management. He is currently Chief Medical Officer at DocsNetwork, Ltd. where he provides thought leadership and offers clients his expertise in strategic planning, clinical transformation, and quality improvement. He has delivered more than 60 CME lectures, and is currently on the editorial board of the Journal of Patient Safety and the journal of Patient Safety and Quality Healthcare. Chaiken writes a column on technology and quality for the journal Patient Safety and Quality Health Care.
Chaiken received his medical degree from SUNY Downstate Medical Center, NYC, his masters in public health degree in health services administration from the Harvard School of Public Health and his bachelors of arts degree in psychology from the University at Albany. He acquired his specialty training from the Centers for Disease Control as an Epidemic Intelligence Service Officer and from the New Jersey State Department of Health as a preventive medicine resident. He served as a Board member (2006-2010), Board Liaison to HIMSS Europe (2006-2009), and Board Chair (2009-2010), and continues his involvement as a Fellow of the Health Information Management and Systems Society (HIMSS).
H. Westley Clark
Director, Center for Substance Abuse Treatment, SAMHSA
As director of the Center for Substance Abuse Treatment under the Substance Abuse and Mental Health Services Administration, U.S. Department of Health and Human Services, Dr. H. Westley Clark leads the agency's efforts to provide effective and accessible treatment to all Americans with addictive disorders. Dr. Clark's areas of expertise include substance abuse treatment, methadone maintenance, pain management, dual diagnosis, psychopharmacology, anger management, and medical and legal issues. He is also a noted author, clinician, teacher and spokesperson in the field of addiction and forensic psychiatry.
Dr. Clark has received numerous awards for his contribution to the field of substance abuse treatment, including the 2008 President of the United States of America, Rank of Distinguished Executive in the Senior Executive Service Award in recognition of his personal commitment to excellence in government and public service. In 2003, he was honored with Presidential Rank of Meritorious Executive Award for his sustained superior accomplishments in management of programs of the United States Government and for noteworthy achievement of quality and efficiency in the public service. Dr. Clark was also awarded the 2008 John P. McGovern Award from the American Society of Addiction Medicine for his contributions toward increased understanding of the relationship between addiction and society.
Dr. Clark received his medical degree from the University of Michigan and his law degree from Harvard University Law School. Dr. Clark received his board certification from the American Board of Psychiatry and Neurology in psychiatry and sub-specialty certifications in both addiction and forensic psychiatry. Dr. Clark is licensed to practice medicine in California, Maryland, Massachusetts and Michigan. He is also a member of the Washington, D.C., Bar Association.
Security Architect, Department of Veterans Health Affairs
Mr. Davis is the Standards Security Architect for the Veterans Health Administration, Office of Health Informatics, Emerging Health Technologies and Standards and Interoperability Offices. He is the author of VHA's "Security Blueprint" a vision for VHA's service-oriented security architecture. He leads architectural efforts to improve clinician access to electronic health records through single-sign on technology, emergency access, role-based access control, electronic signature, Federated Identity Management, secure messaging, information rights management, secure software development and enterprise-wide security audit services. He represents and leads VA participation within several Standards Development Organizations and HHS sponsored groups. He is a co-author of "Person-Centered Health Records, "Modeling Privilege Management and Access Control, published in the International Journal of Medical Informatics and "Role Engineering for Enterprise Security Management".
Michelle De Mooy
Senior Associate, National Priorities, Consumer Action
Michelle De Mooy is Senior Associate for National Priorities with Consumer Action, a national nonprofit that empowers underrepresented consumers to assert their rights in the marketplace and financially prosper. Her work is focused primarily on enhancing consumer privacy (digital and health) online and in the mobile space by advancing pro-consumer policy and legislation and facilitating dialogue between industry and other stakeholders to build innovative solutions to privacy questions. Michelle currently sits on the Advisory Board of the Future of Privacy Forum, a privacy think tank located in Washington, D.C.
Prior to Consumer Action, Michelle was a Senior Consultant for eCampaigns at M+R Strategic Services, where she managed online media strategy for the Campaign for Tobacco-Free Kids, The Wilderness Society, and labor rights group American Rights at Work. Before relocating to DC in 2005, Michelle provided strategic marketing, communications and technology consulting for non-profits and universities in the Philadelphia area, including the Women's Law Project, Women’s Opportunities Resource Center, To Our Children’s Future With Health, the University of Pennsylvania and Villanova University.
In Philadelphia, Michelle was a senior marketing manager for Investor Broadcast Network where she managed corporate communications, brand advertising and marketing for three web properities, radionwallstreet.com, hedgecall.com, and investorbroadcast.com. She was also involved in the early days of the first dotcom boom, developing software and website projects for startups in San Francisco, including Looksmart, Ltd.
Michelle graduated from Lehigh University in 1997 with a degree in Government.
Managing Director of Software, Jericho Systems Corporation
Duane DeCouteau brings to Jericho more than 26 years of broad professional experience as a software architect. In his role as Managing Director of Software, Duane leads the R&D and product development efforts for Jericho’s patented EnterSpace Decisioning System (ESDS), and ensures that its vision, directions and architecture align with the needs of Jericho’s major clients and industry standards.
Mr. DeCouteau has a very strong background in the healthcare industry, having worked in senior roles with federal agencies including the Department of Veteran’s Affairs (VA) and the Department of Defense (DoD), standards development organizations such as OASIS, and other major federal contractors. Duane’s expertise reinforces Jericho’s commitment to the healthcare industry and the company’s emergence as a key provider of standards-based technology for the secure sharing of electronic healthcare records.
Most recently, Mr. DeCouteau served as senior software architect working with the VA to co-author three fully ratified OASIS standards addressing patient security and privacy concerns: the Cross-Enterprise Security and Authorization (XPSA) Profiles of SAML, XACML, and WS-Trust for Healthcare. Mr. DeCouteau continues to lead the adoption of attribute based access control (ABAC) through his involvement in the release of the OASIS XSPA and VA Consumer Policy Preferences (CPP) reference Implementation models, as well as through multi-vendor interoperability demonstrations in the U.S. and abroad.
Mr. DeCouteau has also been a contributing developer on several major clinical initiatives such as the DoD Nationwide Health Information Network (NHIN) and Virtual Lifetime Electronic Record (VLER) release 1a. VLER is a system championed by President Obama, with Jericho being one of only eight civilian firms selected to provide key architectural components. Mr. DeCouteau also contributed to the implementations of the DoD’s AHLTA military health system and the VA’s VistA, an enterprise-wide information system built around an Electronic Health Record (EHR).
Mr. DeCouteau's healthcare background also includes significant work in Clinical Decision Support projects focused on improving patient care. These include the Centers for Medicare & Medicaid Services; Mountain-Pacific Quality Health Foundation’s Chronic Disease Management System (CDMS); the State of Indiana’s Chronic Disease Management System for Medicaid; the Distributed Decision Support System (DDSS) for Telemedicine and Advanced Technology Research Center (TATRC); and Naval Health Research Center San Diego’s Knowledge Management Repository (KMR) addressing the development of interoperable clinical rulesets.
Mr. DeCouteau’s career as a senior engineer, architect, and technologist spans multiple business sectors and companies. His healthcare experience includes Ascenda Healthcare, Edmond Scientific Company, Scientific Application International Company (SAIC), The Geneva Foundation, GoldBelt Raven, Northrop Grumman Clinical Information Systems Division/Integic, Iowa Foundation for Medical Care (IFMC), and Mountain-Pacific Quality Health Foundation. In the telecommunications industry, Mr. DeCouteau has worked with AT&T Wireless, Voicestream Wireless, and Nextlink. His defense and aerospace background includes roles with Boeing Defense and Space Group, Sikorsky International Products, Inc., and General Dynamics.
Duane is a frequent presenter at major industry conferences including RSA, HIMSS, IDTRUST, AMIA, and the AMA. He is a member of Montana’s Health Information Exchange (HIE) Security and Privacy public workgroup, and is a voting member in the OASIS SAML, XACML, and XSPA technical committees.
Mr. DeCouteau studied Physics and Mathematics at Eastern Washington University, with continuing education through University of California San Diego, Seattle Pacific University, and Boeing Computer Services Training Center.
Barbara J. Evans
Associate Professor of Law; Co-Director, Health Law &Policy Institute; Director, Center on Biotechnology & Law,University of Houston Law Center
Barbara Evans is a law professor, co-director of the Health Law & Policy Institute, and director of the Center on Biotechnology & Law at the University of Houston Law Center and has been named a Greenwall Foundation Faculty Scholar in Bioethics for the period 2010-2013. Her research interests include governance, privacy, and financing issues with large health information networks and tissue repositories; regulatory and judicial uses of evidence from large-scale observational studies; and legal barriers to clinical translation of pharmacogenomics. Earlier in her career, she was a partner in the international regulatory practice of a large New York law firm and subsequently advised clients on U.S. privacy and research regulatory matters. She holds an electrical engineering degree from the University of Texas at Austin; M.S. and Ph.D. degrees from Stanford University; a J.D. from Yale Law School, and she completed a post-doctoral Fellowship in Clinical Ethics at the M.D. Anderson Cancer Center.
Much Ado About Data Ownership, Harvard Journal of Law & Technology, Vol. 25 (forthcoming 2011)
Abstract: Recently there have been calls to clarify ownership of data held in large health information networks. This article explores the realities of what patient data ownership would imply to explain why a clearer allocation of entitlements to raw health data would neither enhance patient privacy nor promote access to valuable data resources for public health and research. It updates the debate to account for the 2009 HITECH Act, which correctly recognized that raw patient data are not the valuable resource; these data acquire value only through the application of infrastructure services. The HITECH Act drew on a long tradition of American infrastructure regulation that offers real promise in resolving the infrastructure bottlenecks which (rather than the unresolved status of data ownership) have been the key impediment to data access. Despite this progress there are two unresolved problems, both heretofore neglected in the literature: First, the existing federal regulatory framework governing data access conceives the state’s police power to use data to promote public health much more narrowly than the police power is conceived in all other legal contexts. Second, existing regulatory provisions allowing nonconsensual access to data for research fail to incorporate any “public use” requirement to ensure that unconsented research uses of data are justified by a publicly beneficial purpose. As things stand, persons whose health data are used in research have no assurance that the use will serve any socially beneficial purpose at all. This article reframes the debate. The right question is not who owns health data. Instead, the debate should be about appropriate public uses of private data and how best to facilitate them while adequately protecting individuals’ interests.
Accenture Professor of Biomedical Informatics, VanderbiltUniversity; Director, Regional Informatics, Vanderbilt Center for BetterHealth
Mark Frisse, MD, MBA, MSc, is a professor of Biomedical Informatics at Vanderbilt University School of Medicine. His academic responsibilities include directing the Vanderbilt Owen Graduate School of Management’s executive-level Masters of Management in Health Care program. Funded through the Agency for Healthcare Quality and Research and the State of Tennessee, he was responsible for the creation, operation, and evaluation of a large health information exchange in Memphis, Tennessee. In this capacity he and his colleagues were among the first to implement many policies developed through the Connecting for Health Common Framework. His current research in privacy and security is funded through the SHARP research program of the Office of the National Coordinator for Health Information Technology.
Senior Director, Privacy and Security, HIMSS
Lisa A. Gallagher, BSEE, CISM, CPHIMS serves as HIMSS’ Senior Director of Privacy and Security. In this role, she is responsible for all of the privacy and security programs and volunteer Steering Committee, Task Force and five Work Groups. As well, Ms. Gallagher provides privacy and security content support for HIMSS’ Federal and State Government relations/advocacy work.
Ms. Gallagher currently serves on the ONC Standards Committee’s Privacy and Security Work Group and the Patient Matching Power Team.
Before joining HIMSS, she served as the Certification Development Director for the Certification Commission for Health Information Technology (CCHIT) (www.cchit.org) , where she helped develop the product certification program for electronic health record (EHR) products.
In a past position as Senior Vice President of the Health Information Technology Department at URAC, an independent, nonprofit healthcare accreditation organization, Ms. Gallagher created and managed a series of information technology-focused healthcare accreditation programs, including the HIPAA Privacy and Security Accreditations.
Ms. Gallagher has a Bachelor of Science degree in Electrical Engineering, is a certified trust technology evaluator (NSA), and is a Certified Information Security Manager (CISM) (ISACA). She is also a Certified Professional in Healthcare Information and Management Systems (CPHIMS).
Kimberly S. Gray
Chief Privacy Officer, Global IMS Health
Kimberly S. Gray is the global chief privacy officer of IMS Health, the world's leading provider of market intelligence to the pharmaceutical and healthcare industries. She is responsible for the development, oversight and promotion of IMS Health’s comprehensive privacy, data protection and data management program, which includes policy development, communications and strategic direction for the company.
Prior to joining IMS Health, Gray was Highmark Inc.'s first chief privacy officer. There she developed and implemented Highmark’s corporate privacy compliance program and managed projects designed to better protect Highmark’s members and the confidential data of Highmark and its subsidiaries. An attorney who has worked in both private practice and corporate settings, Gray has co-chaired the health care law committee and has served as a delegate of the Pennsylvania Bar Association. She has served as an adjunct professor at the Dickinson School of Law of the Pennsylvania State University and in the master's program of Shippensburg University.
Gray serves on the Ponemon Institute’s RIM Council, the Centre for Information Policy Leadership (CIPL), the Ethics Committee of the European Pharmaceutical Market Research Association (EphMRA), the Confidentiality Coalition of the Healthcare Leadership Council and the Executive Council of HITRUST. She has served on the Board of Directors of the International Association of Privacy Professionals (IAPP) and continues to be actively involved with IAPP, especially in its educational and networking programs. She is also an active member of the American Health Lawyers Association and the American Bar Association's Health Law Section.
Gray holds a Juris Doctor from The Dickinson School of Law of the Pennsylvania State University. She lectures frequently on privacy and information security issues.
Stephania H. Griffin
Director, Information Access and Privacy Office and Privacy Officer, Veterans Health Administration
Mrs. Griffin started as the VHA Privacy Officer in November 1999. Since that time, a comprehensive national Privacy Program has been developed and implemented with extensive compliance monitoring activities being continuously conducted despite the challenge of VHA being the nation’s largest integrated health care system.
Mrs. Griffin is responsible for overseeing the implementation and improvement of the national Privacy Program within VHA and the monitoring of compliance of the Privacy Program with all Federal privacy law, regulations, and VA guidance. In addition, she oversees the VHA Freedom of Information Act (FOIA) Office and Health Information Access Office. Throughout her career, Mrs. Griffin has been committed to protecting the confidentiality of veteran information and working to ensure veteran’s understand and exercise their privacy rights.
Mrs. Griffin received a Bachelor of Science degree in Health Information Management from the Medical College of Georgia. She is a member of the American Health Information Management Association and International Association of Privacy Professionals with credentials as a CIPP/G. Mrs. Griffin participates at various times on association and intergovernmental workgroups for privacy and security, such as the HHS Office of the National Coordinator, Healthwide Information Network (NwHIN) Coordinating Committee.
Professor of Computer Science, University of Illinois
Carl A. Gunter received his BA from the University of Chicago in 1979 and his PhD from the University of Wisconsin at Madison in 1985. He worked as a postdoctoral researcher at Carnegie-Mellon University and the University of Cambridge in England before joining the faculty of the University of Pennsylvania in 1987 and the University of Illinois in 2004 where he is now a professor in the Computer Science Department. He serves as the director of Illinois Security Lab, the Center for Health Information Privacy and Security, and the Strategic Advanced Research Projects on Security (SHARPS).
Professor Gunter has made research contributions in the semantics of programming languages, formal analysis of networks and security, and privacy. His contributions to the semantics of programming languages include the interpretation of subtypes using implicit coercions, type inference for continuations and prompts, the use of Grothendieck fibrations as a model of parametric polymorphism, the mixed powerdomain, and the use of Petri nets as a model of linear logic. His 1992 textbook and his chapter in the Handbook of Theoretical Computer Science are standard references on the semantics of programming languages. He has also served extensively as research consultant and expert witness on programming languages and software. Professor Gunter’s contributions to the formal analysis of networks and security include the Packet Language for Active Networks (PLAN), the WRSPM reference model for requirements and specifications, the first formal analyses of Internet and ad hoc routing protocols, the Verisim system for analyzing network simulations, and exploiting bandwidth contention as a DoS countermeasure. His work on privacy includes the first research on certificate retrieval for trust management and the formal analysis of regulatory privacy rules. Professor Gunter founded Probaris Technologies, a company in the Philadelphia area that provides credentials for employees of government agencies such as the Social Security Administration and the Patent and Trade Office.
His recent research focuses on security and privacy issues for the electric power grid and healthcare information technologies.
Counsel at Gleiss Lutz, Berlin
Christian Hamann is a counsel in the Berlin office of Gleiss Lutz, a leading German law firm with more than 280 lawyers. Before joining Gleiss Lutz in 1999, Christian worked as an assistant teacher at the Free University of Berlin (Freie Universitaet Berlin). He specialises in administrative law with a focus on telecommunications, IT and data protection issues. Over the years he has gained a wide range of experience in advising national and international clients on all kinds of questions arising from European and German data protection legislation. Christian regularly advises major statutory health funds as well as private businesses from the healtch care sector with respect to the admissible use of patients' personal data. He has also assisted various multinational corporate clients in implementing international data privacy policies.
Dr. Christian Hamann, born 1968. University of Berlin (Freie Universität). Dr. iur. 2000. With the Berlin office since 1999. Member: Society for Data Protection and Data Security (GDD).
Practice Areas: Administrative, especially data protection, telecommunications, information technology, health care.
Languages: German, English.
David W. Hilgers
Partner, Brown McCarroll, L.L.P.
David W. Hilgers is a Partner at Brown McCarroll, L.L.P. and is a member of the firm’s Health Care Law Section. He has practiced law for more than thirty-five years. His primary focus is on health care, corporate, and administrative law. Mr. Hilgers represents healthcare providers, including physicians, dentists, healthcare systems, managed care organizations, long-term care facilities, multi-specialty groups, hospitals, hospital districts, and community mental health and mental retardation centers.
Mr. Hilgers is a member of the American Bar Association’s Health Law Council, served as the 2009-2010 Chair of the Health Law Section, and is the current Chair of the Standing Committee on Continuing Legal Education of the Section Officers Council. He is a regular speaker on issues surrounding the healthcare industry. He was honored in Chicago in November 2004 as one of ten Nightingale’s Healthcare News’ Outstanding Physician Practice Lawyers in the United States. Other honors include Best of Business Attorney, Health Care Law, Austin Business Journal, 2005; “Leaders in their Field,” Healthcare Law, Chambers USA 2005-2010 Guides; and Super Lawyer, Health Care Law, named by Law and Politics Media, Inc. and published in Texas Monthly, 2003-2010. He has been recognized in Best Lawyers in America, 1999-2011; and Texas Lawyer’s The Go-To Guide, Health Law, 2007.
Mr. Hilgers received his Doctor of Jurisprudence, with honors, from The University of Texas School of Law and his Bachelor of Arts, with honors, from Swarthmore College.
He is a member of the Order of the Coif, and was a briefing attorney to the Chief Justice ofthe Texas Supreme Court.
Robert L. Hutchings
Dean of the Lyndon B. Johnson School of Public Affairs at The University of Texas at Austin
Robert Hutchings is dean of the Lyndon B. Johnson School of Public Affairs at The University of Texas at Austin. Before joining the LBJ School in March 2010, Hutchings was Diplomat in Residence in the Woodrow Wilson School of Public and International Affairs at Princeton University. He was also faculty chair of the Master in Public Policy program and served for five years as assistant dean of the school.
During a public service leave from Princeton University in 2003-05, he was Chairman of the U.S. National Intelligence Council in Washington. His combined academic and diplomatic career has included service as Fellow and Director of International Studies at the Woodrow Wilson International Center for Scholars, Director for European Affairs with the National Security Council, and Special Adviser to the Secretary of State, with the rank of ambassador.
Ambassador Hutchings also served as deputy director of Radio Free Europe and on the faculty of the University of Virginia, and has held adjunct appointments at the Johns Hopkins University School of Advanced International Studies and Georgetown University’s School of Foreign Service. He is author of At the End of the American Century and of American Diplomacy and the End of the Cold War, which was published in German as als der Kalte Krieg zu Ende war, along with many articles and book chapters on European and transatlantic affairs.
While chairing the National Intelligence Council, he directed the year-long “NIC 2020” project resulting in a report called Mapping the Global Future, examining the forces that will shape world affairs out to the year 2020. His current research springs from that project and aims at developing a global policy agenda, based on a series of structured strategic dialogues over the past two years with leaders in China, Russia, India, Brazil, South Africa, and a dozen other key countries around the world.
Hutchings is a director of the Atlantic Council of the United States and of the Foundation for a Civil Society and is a member of the Council on Foreign Relations and the British-North American Committee. A recipient of the National Intelligence Medal and the U.S. State Department Superior Honor Award, he was also awarded the Order of Merit (with Commander’s Cross) of the Republic of Poland for his contributions to Polish freedom. He is a graduate of the United States Naval Academy and received his Ph.D. from the University of Virginia.
Co-founder, Reos Partners
Joe is a founding member of Reos Partners – a global organization specializing in helping diverse teams develop new approaches for solving today’s most critical issues. His approach focuses on co-designing and co-delivering innovative solutions – by bringing together multi-sectoral groups of committed people and supporting them to work together, innovate and collaborate in creating new outcomes. Examples of Joe’s recent projects include: working with the World Bank to create new coalitions to foster innovation and collaboration across in the extractive industries in Africa, building and supporting an alliance committed to the re-invention of food and agriculture systems in the Midwest, helping a Fortune 100 pharmaceuticals company understand the new frontiers of personal medicine, creating a new alliance to combat child malnutrition in India (Bhavishya Alliance), and exploring new strategies for developing a low-carbon economy in Canada.
Prior to co-founding Reos Partners, Joe was Managing Partner of Generon Consulting from 2004 to 2007, where he held leadership roles on numerous corporate and public service projects. Joe spent seven years with Shell International, where he held a variety of technical and commercial positions. Before coming to the energy sector Joe spent 5 years as a research scientist for the British Antarctic Survey. Joe has a BA from Oxford University and a PhD from Cambridge University.
Author and CEO, Tomorrow's Enterprises Corporation
Tomorrow’s Enterprises is an innovative start-up devoted to exploring the forces driving the future of innovation. Brian’s upcoming book, “Tomorrow’s Enterprises: 101 News Reports From The Future” is devoted to helping leaders to explore the forces driving the future of their organizations while exercising their imaginations.
As a futurist and management consultant for the past 20 years Brian has worked with Fortune 500 companies, start-ups, and non-profit corporations. For eight years (1998 to 2006) he served as host of Global Business Network’s member’s blog. His special talent is in helping leadership groups to bring new enterprises to life. He is also recognized as a Project Management Professional (PMP) by the Project Management Institute.
His articles on innovation and leadership have been published in the Wall Street Journal, CIO Magazine, The Journal of Commerce, Research/Technology Management, London Business School’s LABNOTES, and others. In 2006 he founded an annual writing competition at MIT called the “Enterprise Poets Prize in Imagining a Future.” His new Facebook app “Tomorrow’s Enterprises” is devoted to creating a broader forum for exploring the enterprises of tomorrow.
Professor, Departments of Media, Culture, and Communication & Computer Science, New York University
Helen Nissenbaum is Professor of Media, Culture and Communication, and Computer Science, at New York University, where she is also Senior Faculty Fellow of the Information Law Institute. Her areas of expertise span social, ethical, and political implications of information technology and digital media. Nissenbaum's research publications have appeared in journals of philosophy, politics, law, media studies, information studies, and computer science. She has written and edited four books, including Privacy in Context: Technology, Policy, and the Integrity of Social Life, which was published in 2010 by Stanford University Press. The National Science Foundation, Air Force Office of Scientific Research, Ford Foundation, U.S. Department of Homeland Security, and the U.S. Department of Health and Human Services Office of the National Coordinator have supported her work on privacy, trust online, and security, as well as several studies of values embodied in computer system design, including search engines, digital games, facial recognition technology, and health information systems.
Nissenbaum holds a Ph.D. in philosophy from Stanford University and a B.A. (Hons) from the University of the Witwatersrand. Before joining the faculty at NYU, she served as Associate Director of the Center for Human Values at Princeton University.
Editor, O'Reilly Media
Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, networking, and health IT, but his editorial output has ranged from a legal guide about intellectual property to a graphic novel covering teenage hackers. His work for O'Reilly includes the influential 2001 title Peer-to-Peer, the 2005 ground-breaking book Running Linux, and the 2007 best-seller Beautiful Code.
Andy also writes often for O'Reilly's Radar site (http://radar.oreilly.com/) and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World and Internet Law and Business. An article of his on the challenges of adopting free software in government will appear in theJournal of Information Technology and Politics. His web site is http://www.praxagora.com/andyo/.
Director, Office of e-Health Coordination at Texas Health and Human Services Commission
Stephen Palmer serves as the Director of the Office of E-Health Coordination for the Texas Health and Human Services Commission. In this role, he is responsible for leading the Office of E-Health Coordination and coordinating the numerous HIT initiatives that are being implemented within the HHS system and externally. Mr. Palmer also serves as the state HIT coordinator, in which role he serves to manage the state health information exchange program and coordinate the other federally-funded HIT initiatives throughout the state. Mr. Palmer serves on the Bipartisan Policy Center's Task Force on Delivery System Reform and HIT.
Prior to joining the Health and Human Services Commission, Mr. Palmer served as the lead policy analyst for the Texas Health Care Policy Council in the Office of the Governor, the Governor's advisor for health information technology, the Project Director for the Texas Health Information Technology Advisory Committee, the Chair of the Texas delegation to the Gulf Coast Health Information Technology Task Force, and an advisory member of the State Alliance for e-Health, an advisory group providing a voice for the states on HIT issues at the national level.
Prior to joining the Office of the Governor, Mr. Palmer worked as a Medicaid/CHIP policy advisor to the Deputy Executive Commissioner for Health Services at the Texas Health and Human Services Commission. Mr. Palmer also previously worked on the policy staff of the Texas Senate Health and Human Services Committee. Prior to changing careers into public policy, Mr. Palmer was an information technology consultant focusing on interface programming and database administration. Mr. Palmer received a Bachelor's degree in physics and philosophy from Rice University and a Masters in Public Affairs from the LBJ School of Public Affairs at the University of Texas, and is currently pursuing a PhD in public policy, also from the LBJ School of Public Affairs, where his research focuses on health information technology policy.
Deborah C. Peel
Founder and Chair of Patient Privacy Rights
Deborah C. Peel, MD, is a practicing Freudian psychoanalyst and national health privacy expert. She founded Patient Privacy Rights (PPR) in 2004, now with over 12,000 members. PPR is the leading consumer watchdog for health privacy in the United States.
PPR leads the bipartisan Coalition for Patient Privacy, representing 10.3 million Americans. The Coalition’s principles form the core of the historic new federal consumer protections enacted in the 2009 stimulus bill: a ban on the sale of protected health information without consent, audit trails of all disclosures , the ability to segment sensitive information, meaningful breach notice, the right to prevent disclosure of health data for payment and healthcare operations if payment is out-of-pocket, and encryption.
PPR is the voice for Americans who want to control sensitive electronic health information---from prescription records to DNA---to protect jobs, opportunities, reputations, and their children’s futures.
PhD candidate, Faculty of Information, University of Toronto
Stephanie Perrin is an internationally recognized privacy expert who has worked for over 25 years for the Canadian federal government. She has written a text on the Canadian privacy legislation for the private sector, PIPEDA, and worked as Chief Privacy Officer for Zero Knowledge Systems, a Montreal based company that developed anonymizing software for the Internet. She has worked as a privacy consultant for numerous organizations, developing privacy policies and compliance programs. She is now working on a doctorate in information studies at the University of Toronto, focusing on Identity Standards and the failure to adopt privacy enhancing technologies.
Chief Privacy Officer, Office of the National Coordinatorfor Health IT, Department of Health and Human Services
Joy Pritts joined the Office of the National Coordinator for Health Information Technology, Department of Health & Human Services in February 2010 as its first Chief Privacy Officer. Ms. Pritts provides critical advice to the Secretary and the National Coordinator in developing and implementing ONC’s privacy and security programs under HITECH. She works closely with the Office for Civil Rights and other operating divisions of HHS, as well as with other government agencies to help ensure a coordinated approach to key privacy and security issues. Prior to joining ONC, Ms. Pritts held a joint appointment as a Senior Scholar with the O’Neill Institute for National and Global Health Law and as a Research Associate Professor with the Health Policy Institute, Georgetown University. She has an extensive background confidentiality laws including the HIPAA Privacy Rule, federal alcohol and substance abuse treatment confidentiality laws, the Common Rule governing federally funded research, and state health information privacy laws.
Principal at Powers, Pyles, Sutter, & Verville
Jim Pyles is a co-founder of the firm and has nearly 40 years of experience in litigation, counseling, and lobbying in the field of health law. Mr. Pyles has more than 20 years of experience in the law of health information privacy at all levels of the federal judiciary, both houses of Congress and with the Executive Branch of government. Mr. Pyles has testified on numerous occasions before Congress, appeared in court as an expert witness, made numerous appearances on national television and presented lectures in several law schools on the law of health information privacy.
See Jim Pyles in this Bloomberg News segment: Hospitals Wary of Hackers Seek Insurance from AIG
Deputy Director, FTC Bureau of Consumer Protection
Jessica Rich is currently Deputy Director of the FTC’s Bureau of Consumer Protection. Prior to that, Ms. Rich served for 11 years as Assistant and then Associate Director in the FTC’s Division of Privacy and Identity Protection. In that position, she handled or oversaw a wide variety of privacy and data security matters, including: (1) development of the COPPA, Gramm-Leach- Bliley Safeguards, FCRA Disposal, and Health Breach Notification Rules (2) enforcement against companies such as Microsoft, Toysmart, ChoicePoint, BJ’s Warehouse, Cardsystems, TJX, and LexisNexis (3) the FTC’s Behavioral Advertising initiative, including development of the staff Behavioral Advertising Principles and report (4) testimony and technical assistance to Congress regarding draft and proposed legislation, and (5) public workshops, surveys, and reports on new and emerging privacy issues.
Prior to her work in the privacy division, Ms. Rich served as Legal Advisor to the Director of the FTC’s Bureau of Consumer Protection, and was an attorney in privacy practice. Ms. Rich is a graduate of New York University Law School and Harvard College.
Vice President & Distinguished Analyst, Gartner
Wes Rishel is a vice president and distinguished analyst in Gartner's healthcare provider research practice. He covers electronic medical records, interoperability, health information exchanges and the underlying technologies of healthcare IT, including application integration and standards.
Mr. Rishel is a member of the Health IT Standards Committee, a federal advisory committee created by the American Recovery and Reinvestment Act of 2009. He is also a trustee of the Certification Commission for Healthcare Information Technology and a former commissioner. He has served on the Healthcare Information Technology Advisory Panel of the Joint Commission on Accreditation of Healthcare Organizations. He was the founding technical chair of Health Level Seven (HL7) and served as the board chair in 2002 and 2003, and continues on the board. He has served on the boards of directors of the Workgroup for Electronic Data Interchange (WEDI), the Healthcare Information Management Systems Society and the eHealth Initiative. Prior to joining Gartner, Mr. Rishel consulted in healthcare integration and clinical systems and developed standards-based architectures for major health systems; designed clinical applications; helped to lead HL7's decision to apply XML, object modeling and software component technologies; and was the author of the HL7 implementation guide for Health Insurance Portability and Accountability Act claims attachments. Previously, Mr. Rishel was vice president of software development for several independent technology providers.
Professor of Law, George Washington University
Jeffrey Rosen is a professor of law at The George Washington University and the legal affairs editor of The New Republic. His most recent book is The Supreme Court: The Personalities and Rivalries that Defined America. He also is the author of The Most Democratic Branch, The Naked Crowd, and The Unwanted Gaze. Rosen is a graduate of Harvard College, summa cum laude; Oxford University, where he was a Marshall Scholar; and Yale Law School.
Professor Rosen's essays and commentaries have appeared in the New York Times Magazine, The Atlantic Monthly, on National Public Radio, and in The New Yorker, where he has been a staff writer. The Chicago Tribune named him one of the 10 best magazine journalists in America and the L.A. Times called him, "the nation's most widely read and influential legal commentator." Professor Rosen lives in Washington, D.C., with his wife Christine Rosen and two sons.
William M. Sage
Vice Provost for Health Affairs and Law Professor, University of Texas, Austin
William M. Sage, MD, JD, an authority on health law and policy, is Vice Provost for Health Affairs and James R. Dougherty Chair for Faculty Excellence at the University of Texas at Austin. Prof. Sage is a member of the Institute of Medicine of the National Academies, serves on the Fellows Council of the Hastings Center on bioethics, and serves on the editorial board of Health Affairs. He holds degrees from Harvard and Stanford, and has practice experience in both medicine and law. In 1993, he headed four working groups of the Clinton administration’s Task Force on Health Care Reform.
Before joining the UT faculty in 2006, Prof. Sage was professor of law at Columbia University, and has had visiting appointments at Harvard and Duke. His edited books include Medical Malpractice and the U.S. Health Care System and Uncertain Times: Kenneth Arrow and the Changing Economics of Health Care. He has written over 100 articles in publications such as JAMA, Health Affairs, the Journal of Health Politics, Policy and Law, and the law reviews of Columbia, Duke, Georgetown, Texas, and Vanderbilt.
President & CEO, e-MDs
Dr. Stearns is the President and CEO of e-MDs, Inc. a leading national vendor of electronic health records. He is a board certified neurologist who won several teaching awards during his 15 years in clinical and academic medicine. He has 14 years of experience in health information technology and has provided leadership to several high profile projects at the National Library of Medicine, the National Cancer Institute, and the College of American Pathologists. Dr. Stearns served as the international director of SNOMED, where he played a central role in the development of SNOMED CT, an evolving standard for the electronic transmission of clinical information being adopted worldwide. He has 9 years of direct experience with the design and implementation of electronic health records. He is also a Certified Professional Coder and Family Practice Coder and a member of the American Association of Professional Coders Family Practice Steering Committee.
Dr. Stearns is an accomplished lecturer and has been invited to speak on a wide array of topics at national and local venues including electronic health records, standards, health information exchanges, Meaningful Use, coding compliance, clinical terminology, patient safety, patient privacy, managing data integrity in information systems, SNOMED CT, the history of ICD-9-CM, quality of care improvements related to technology, clinical efficacy research, practice optimization, HIT workforce development, and genomic medicine (personalized healthcare). Dr. Stearns sit on several committees and boards, including serving as the board president of the Texas e-Health Alliance, a member of the American Society of Health Information Managers Physician Practice Council, a panel member and chief technology editor for the American Society of Health Information Managers, a member of the Texas HIT Workforce Development Executive Committee, and a member of the University of Texas Healthcare IT Task Force. Dr. Stearns played a central role in creating the University of Texas at Austin HIT certificate program, a nationally recognized model for HIT workforce development.
Chief Medical Information Officer at TATRC
Dr. Steve Steffensen is a board certified active duty Navy Neurologist who currently works for the Telemedicine and Advanced Technology Research Center (TATRC) as Chief of the Advanced Information Technology Group (AITG). He has been involved in numerous health IT projects related to the Armed Forces Health Longitudinal Tracking Application (AHLTA) and is recognized across the Military Health System as a physician advocate in electronic medical record business process integration and innovation.
Senior Advisor, Privacy International
Barry Steinhardt recently retired from the American Civil Liberties Union after a 28 year career that included service as Associate Director and founding ACLU's Program on Technology and Liberty.
Steinhardt is now serving as a Trustee and Senior Advisor to the London based Privacy International. He is a member of the Department of Homeland Security’s Data Privacy and Integrity Advisory Committee and the Board of Directors of the ACLU of Virginia.
Steinhardt has advocated for privacy and information technology issues tirelessly, speaking to audiences ranging from the National Conference of State Legislatures, to the National Commission on the Future of DNA Evidence, to the annual conference of the World’s Privacy Commissions. He has written on privacy and free expression issues in a variety of periodicals ranging from USA Today, to CIO Magazine, to the journal of the Davos World Economic Forum.
He has served on a wide variety of panels and Boards, including the Department of Transportation’s Negotiated Rule Making on national driver’s license standards, the Advisory Committee to the US Census, the Blue Ribbon Panel on Genetics of the National Conference of State Legislatures. He also was selected to be a member of the US delegation to the G-8 Government and Private Sector Tokyo conference on Cyber Crime and served as an advisor to the Czech Helsinki Committee.
In 1998, Steinhardt took a leave of absence from the ACLU to serve as President of the Electronic Frontier Foundation.
Professor, Carnegie Mellon University, School of Computer Science
Senior Staff Attorney, Electronic Frontier Foundation
Lee Tien is a Senior Staff Attorney with the Electronic Frontier Foundation (EFF), specializing in free speech law and privacy law, including computer security issues. As part of his policy work in electronic health records, he advises the California Health and Human Services Agency and its Office of Health Information Integrity as a member of the California Privacy and Security Advisory Board Privacy Steering Team. He is also a member of the Policy Advisory Committee for Cal eConnect. He has published articles on children's sexuality and information technology, anonymity, surveillance, the First Amendment status of publishing computer software, and the state secrets privilege. He received his undergraduate degree in psychology from Stanford University and his law degree from the University of California-Berkeley School of Law, where he also did graduate work in the Program in Jurisprudence and Social Policy.
Toward Segmentation, PowerPoint prepared by Lee Tien, Electronic Frontier Foundation, for Getting IT Right: Protecting Patient Privacy Rights in a Wired World, June 13, 2011
Guido van 't Noordende
Faculty of Science, Informatics Institute, University of Amsterdam
Guido van 't Noordende is a computer sience researcher at the University of Amsterdam. His research focuses on mobile code, on operating systems, and on security in large-scale distributed systems. He and his colleagues study various issues related to privacy and security in large-scale systems in general, including policy issues.
His recent work focuses on running sensitive computations on distributed computational Grids. His security analysis of the Electronic Patient Record (EPD) system in the Netherlands received widespread publicity.
Senior Counsel and Director of the Open Government Project, Electronic Privacy Information Center
John Verdi is EPIC Senior Counsel and the Director of EPIC's Open Government Project. His work focuses on legal issues relating to consumer privacy, digital security, government surveillance, and open government. He supervises EPIC's litigation program, litigates Freedom of Information Act lawsuits, and files amicus curiae briefs in the Supreme Court and federal circuits. He is co-editor of Litigation Under the Federal Open Government Laws 2008, and regularly speaks on privacy issues at conferences and in the media.
Prior to joining EPIC, Mr. Verdi was a civil litigator in Washington D.C. His litigation experience includes matters relating to federal and state open records statutes, Administrative Procedure Act claims regarding federal oversight, and tort cases involving digital information misappropriation and misuse. Prior to his career as a lawyer, Mr. Verdi worked as a computer programmer on a variety of projects, including several applications involving secure financial data. He also advised the National Hockey League on a host of technology issues, including data collection as it relates to the Children's Online Privacy Protection Act. He is a graduate of Harvard Law School, and earned his BA in Philosophy, Politics, and Law at Binghamton University. He is a member of the District of Columbia and New Jersey bars.
Senior Clinical Consultant, Intellica
Dave Wanser, Ph.D. is a Senior Clinical Consultant for Intellica, a health information technology company with a public sector focus and a consultant with a private practice focusing on behavioral health and healthcare technology. He was previously a Visiting Fellow at the Lyndon B. Johnson School of Public Affairs at the University of Texas at Austin from 2007-2011, and a lecturer in the Health Information Technology Program within the College of Natural Sciences. He served as Executive Director of the National Data Infrastructure Improvement Consortium (NDIIC) from founding until October 2010. Until March 2007 he served as the Deputy Commissioner for Behavioral and Community Health at the Texas Department of State Health Services, the consolidated department for mental health, substance abuse and public health, during the first three years after its creation in 2004.
Dr. Wanser was appointed as Executive Director of the Texas Commission on Alcohol and Drug Abuse in 2001 and served in that role for three years. Preceding this and during his fifteen year tenure at the Texas Department of Mental Health and Mental Retardation, Dr. Wanser served as the Director of Behavioral Health Services and Director of the NorthSTAR Managed Behavioral Health Program and in other management positions.
He is past president of the Board of Directors of the National Association of State Substance Abuse Directors and past president of the Board of Directors of NDIIC. He also served as the chairperson of the Adult Services Division of the National Association of State Mental Health Program Directors. He has served on advisory boards for the Department of HHS Health Information Technology Policy Committee Privacy Workgroup and the Certification Commission for Health Information Technology Behavioral Health Workgroup. He has also served on advisory boards for several other national organizations and numerous federally sponsored advisory groups. Dr. Wanser has done extensive consulting in health, health information technology, mental health and substance use service systems. He has a Ph.D. in psychology from the University of Oklahoma, where he was recognized as a distinguished alumnus in 2005.
David C. Warner
Professor of Public Affairs and Wilbur J. Cohen Professor inHealth and Social Policy, LBJ School of Public Affairs at theUniversity of Texas at Austin
David C. Warner's major teaching and research interests are in economics, health policy, and health finance. A graduate of Princeton University and Syracuse University (Ph.D. in economics), he formerly taught at Wayne State University and Yale University and was Deputy Director of the Office of Program Analysis of the New York City Health and Hospitals Corporation. Professor Warner has served as a consultant to a number of organizations in the health sector, and for six years was a member of the Board of Directors of Austin's Brackenridge Municipal Hospital. In addition, he was Chairman of the Texas Diabetes Council from January 1985 to December 1989. He has also served on several editorial and advisory boards and been appointed to other state level advisory committees. At the LBJ School, Professor Warner has directed policy research projects on a variety of health and mental health topics. Among his publications are Toward New Human Rights, more than forty articles and book chapters, and sixteen books, monographs, and policy research project reports. He is currently working on projects related to improving health insurance coverage, the integration of the U.S. and Mexican health care systems, diabetes policy, public health funding, and U.S.-Mexico border health.
Advisor, Arnall Golden Gregory, Atlanta and Washington DC.
Dr. Alan F. Westin is Professor of Public Law and Government Emeritus at Columbia University, where he taught for 37 years. He was the founder in 1993 of the Center for Social & Legal Research and President of its Privacy & American Business activity.
Currently, he is an Advisor to the law firm of Arnall Golden Gregory, Atlanta and Washington DC.
Dr. Westin is the author or editor of 26 books on constitutional law, civil liberties, American politics, and privacy, and has been listed in Who’s Who in America for three decades. In 2005, he received the Privacy Leadership Award of the International Association of Privacy Professionals, the nation’s leading organization for privacy officers in business, government, and the non-profit sector.
Professor Westin’s first major books on privacy – Privacy and Freedom, published in 1967, followed by Databanks in a Free Society 1972 (for the National Academy of Sciences)– are considered seminal works on privacy. Each correctly predicted how advances in data surveillance of the mid-1960s and new computer and telecommunication applications of the 70s would affect American organizations that keep records about consumers, employees, and citizens, organizations ranging from hospitals, health and life insurers, credit bureaus, and banks to colleges, police, and welfare agencies. Both books called for creating new laws, new organizational policies, and continuous new-technology privacy assessments in the governmental, business, and non-profit areas, if basic privacy values and rights were to be preserved in an increasingly information-technology driven world.
Dr. Westin is a leading authority on consumer-privacy public opinion surveys, and in understanding and interpreting the privacy attitudes of the American public. He has worked with Louis Harris & Associates (now Harris Interactive) and Opinion Research Corporation (ORC) on over 60 national privacy surveys since 1978. He created in 1995 a consumer-privacy segmentation of the American public that captures the continuing orientations of three main attitudinal groups of consumers on privacy issues. His reports on consumer privacy concerns and attitudes have been featured in the New York Times, Wall Street Journal, Consumer Reports, and dozens of other national publications.
Since 9/11, Dr. Westin has been the academic advisor to Harris Interactive on seven national surveys on privacy and civil liberties issues raised by various national anti-terrorist programs. He was the principal author of a report for the Department of Homeland Security’s Privacy Office analyzing all public opinion surveys conducted on these issues between September 2001 and 2006.
Dr. Westin has been a frequent commentator about privacy on national television and radio and a keynote speaker on privacy issues at more than 300 national conferences since the late 1960s. His presentations have not only been in the U.S. but also in Canada, Britain, France, Germany, Italy, Austria, Sweden, Israel, Japan and Hong Kong.
Dr. Westin was the principal expert witness in the enactment of the first two national privacy laws in the United States – the Fair Credit Reporting Act of 1970, providing consumer rights in the credit-bureau industry, and the Federal Privacy Act of 1974. Over the past forty years, he has been a member of U.S. federal and state government privacy commissions; an expert witness before legislative committees and regulatory agencies; and a privacy consultant to many U.S. federal, state, and local government agencies, such as, at the federal level, the Census Bureau, Social Security Administration, General Services Agency, Department of Commerce, and Office of Technology Assessment.
Dr. Westin has also advised many consumer-product companies, including IBM, American Express, Citicorp, Bell Atlantic, Empire Blue Cross and Blue Shield, Equifax, Microsoft, Chrysler, GlaxoWellcome, Merck, and Prudential Insurance, on privacy governance and policies within their companies as they affect their consumer-business relationships.
Health Information Privacy Activities:
Since the mid-1960s, Professor Westin has maintained a continuing special interest in medical confidentiality and health-information-systems privacy issues.
A comprehensive field study of computerization trends and health information was led by Dr. Westin for the U.S. National Bureau of Standards between 1974-76, and produced Westin’s report on Computers, Health Records, and Citizen Rights (1976). The Privacy Code this report recommended was sent by NBS to every hospital in the U.S., and served as a model for hundreds of hospital and health institutions. The NBS Report was the leading empirical study of how computer use in the late 1960’s and early 1970’s was affecting the three main zones of health information use – direct care, payment and quality-assurance, and social uses of medical data.
Between 1978 and the early 1980s, he served as Research Director of the National Commission on Confidentiality of Health Records, a national association composed of the major health-care provider, payer, and quality-care associations in the United States. During this period, he spoke frequently on privacy and health information issues at national conventions or special meetings of the American Medical Association, Health Insurance Association, American Medical Records Association, American Orthopsychiatric Association, American Psychiatric Association, and many other health- professional groups.
Dr. Westin has been a featured speaker at the U.S. Department of Health and Human Services Privacy Task Force Conference on Medical Records and Privacy (February 1993); a reviewer of reports on privacy for the National Institute of Medicine (on emerging regional health data systems), the Journal of the American Medical Association, and for the U.S. Office of Technology Assessment (on privacy and the computerized medical record).
Dr. Westin was the privacy advisor to an award-winning 1994 Public Television Special Documentary on “Privacy and Health in the American Workplace.” Dr. Westin drafted a national corporate-employee and human resources executives survey conducted by Louis Harris and Associates for use on this program, covering employee health and privacy issues in depth.
In 1993, he served as the academic advisor for a national public and leaders Harris survey on “Health Information Privacy.” Results from this survey were released at a national conference in Washington, D.C. in November 1993, at which Dr. Westin spoke, co-sponsored by the U.S. Office of Consumer Affairs, the American Health Information Management Association, and Equifax Inc.
Also in 1993-95, Dr. Westin served as Principal Investigator on a 15-month project on privacy issues in the uses of genetic testing and genetic-test applications, funded by the U.S. Department of Energy for the Human Genome Project and its ELSI Program (Ethical, Legal and Social Issues). In 1997-99, he led a study of future uses of genetic testing in the Life Insurance Industry, commissioned from the Center for Social and Legal Research by State Farm Insurance Company.
Over the past three years, Dr. Westin has led discussions of the HIPAA Privacy Rules at many national conferences. He has been a privacy consultant to several major pharmaceutical companies, from Eli Lilly, Glaxo Welcome and Smith Kline to Merck. He has been a principal speaker at recent health privacy conferences sponsored by the Markle Foundation, IBM, and the U.S. Department of Health and Human Services.
In January 2005, Dr. Westin created the Program on Information Technology, Health Records and Privacy. Its first activity was the release of a survey in February 2005, “How the Public Sees Health Records and an Electronic Medical Record Program,” for which Dr. Westin served as Academic Advisor. The Program’s White Paper, “Computers, Health Records and Citizens’ Rights in the Twenty First Century” is available from Dr. Westin, at email@example.com.
Since the January, 2005 survey on EHRs and privacy, Dr. Westin has partnered with Harris Interactive on four additional EHR-and-privacy surveys, probing what privacy and security protections the public wants to see adopted in any EHR program and how informing patients of such programs and securing their consent should be conducted. The latest Harris-Westin surveys on Electronic Health Records and privacy issues were done in January and March of 2007.
In September, 2007, the Institute of Medicine (IOM) commissioned Westin/Harris to develop and conduct an in-depth national survey on “Privacy and Health Research.” Westin’s survey report was presented to an IOM Committee on HIPAA, Health Research and Privacy in October of 2007. The survey results and analysis were updated and presented by Dr. Westin to another IOM Workshop (on evidence-based health research) in February of 2008. Westin’s 2008 report – “How the Public views Privacy and Health Research” – is available from Dr. Westin.
In 2008, Dr. Westin developed for the Markle Foundation a survey of public attitudes toward Personal Health Records (PHRs), tapping concerns about privacy, security, patient access, and other patient perceptions.
Currently, Dr. Westin is collaborating with the National Partnership for Women and Families on a national survey exploring levels of patient trust and their consequences in EHR systems, as well as in regional health information networks, with comparisons to patients whose information is not yet in electronic systems.