Patient Privacy Rights

Cliff Baker

Cliff Baker is the Managing Partner at Meditology Services.  He is an industry leader in healthcare information technology, privacy and security, and has over 17 years of industry experience. Cliff has worked with the nation’s leading healthcare organizations across all sectors of the industry and has served as an executive advisor for key industry affiliations and companies. He is a sought after contributor and speaker for various health IT and information risk management forums, the lead author of the HITRUST Common Security Framework, and author of various IT Risk Management publications. Prior to forming Meditology, Cliff was the Chief Strategy Officer for HITRUST and also led PricewaterhouseCoopers’ healthcare security practice.

Cliff, a South African native, enjoys following soccer and continues to travel to the World Cup. Cliff spends his free time outdoors hiking and bird watching.

Troy Ball

Ms. Ball is the founder and CEO of Troy & Sons Distillers located in Asheville, North Carolina. Troy & Sons produces America’s first premium moonshine, using an heirloom corn that survived on one family farm in North Carolina. Troy is the fourth female distillery owner in America and the first to produce Moonshine. Next year Troy & Sons will release a Reserve Moonshine and Blonde Whiskey.

Ball is a three time National Champion equestrian and has supported the United States Endurance Team in international competitions in Dubai and Malaysia. She currently sits on the Western Residence Board for the Governor of North Carolina.

Andrew Blumberg, PhD

Andrew Blumberg is an assistant professor of mathematics at the University of Texas at Austin.  His primary research focus is algebraic topology, but he worked on the design of practical privacy-preserving systems for locational privacy and has extensive experience as a software engineer. Andrew has become involved in technology questions surrounding electronic health records more recently, as part of work with PPR.

Andrew holds an A.B in Mathematics from Harvard University and a PhD in Mathematics from the University of Chicago.

Barry P. Chaiken, MD

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.

Lillie Coney

Ms. Coney is associate director of the Electronic Privacy Information Center (EPIC) in Washington, D.C., where her work encompasses forecast and analysis of emerging technology and government policy and its implications for privacy. She coordinates EPIC’s coalition efforts, which include the Privacy Coalition and The Public Voice. She has testified before the House Judiciary Committee on Privacy and Cybercrime Enforcement, and the House Committee on Homeland Security on the topic of watch lists. She assesses privacy implications of emerging technologies and new uses for existing technology’s. In 2009, House Speaker Nancy Pelosi appointed Lillie to the Election Assistance Commission Board of Advisors. Lillie wrote the chapter “Mobilize Underrepresented Voters” in The New York Times bestseller, 50 Ways to Love Your Country. She co-chaired the 2011 Computers Freedom and Privacy Conference: the Future is Now, and chaired the Public Voice Conferences in 2010 and 2011.

Reed Gelzer, MD

Reed Gelzer, MD, MPH has more than 30 years experience in health care delivery systems, first practicing medicine in rural Michigan and then pursuing interests in care quality improvement with health information technology.. After working for an EHR vendor for several years, he expanded into independent consulting, concentrating on electronic health record data quality and medical-legal reliability, founding Trustworthy EHR, LLC. He has also published a number of articles and books on EHR reliability assurance and documentation integrity topics including How to Evaluate Electronic Records Systems. Dr. Gelzer received his MD from Wayne State University , his Masters in Public Health from the University of Michigan , and certified as a compliance consultant. He currently consults on health IT policy topics for Federal agencies as well as for clinical organizations and clinicians. He is also Co-Facilitator for the HL7 EHR Workgroup on Records Management and Evidentiary Support.

John A. Greco Jr.

John Greco is an award-winning marketing, business development, and trade association executive and
cofounder of Greco Associates where he currently serves as Chairman and CEO.

Greco Associates www.GrecoVALUE.com is a professional services firm providing a full range of complementary products and services especially at the intersection of marketing, technology, and business development. Leveraging the latest and evolving technologies, they are consultants as well as integrated solutions providers. With their strategic partners, they offer a wide range of products and services to both the for-profit and nonprofit segments including: cognitive digital marketing; integrated omnichannel marketing including extensive relationships with the digital marketing agency community; market research, intelligence, and data analytics; business development including extensive private equity firm relationships; talent management; affinity, loyalty, rewards programs; and telehealth/telemedicine, strategic healthcare, and other benefit programs. Greco Associate’s healthcare industry experience has included work with the American Medical Association (AMA), MDLIVE, Dr Connection Benefits, InteHealth, N-Squared Technology Partners, and the Delaware Health Information Network among others.

John previously served as President and CEO of the Direct Marketing Association (DMA) where among his many responsibilities and accomplishments his leadership in the areas of privacy and data security was critical to the organization and its members both from the advocacy/public policy perspective as well as in terms of leveraging best practices in consumer choice and control across all marketing channels. Whether regarding opt-in vs. opt-out policies or the formation of the self-regulatory Digital Advertising Alliance in collaboration with the Interactive Advertising Bureau (IAB) and the Electronic Retailing Association (ERA), which resulted in the consumer focused AdChoice icon for digital advertising, he consistently led with his vision for any use of consumer data being tied to the win-win proposition of relevance, responsibility, and results for all parties.

Beginning his career at RCA as a design engineer and product manager, John then joined AT&T in its
renowned Leadership Continuity Program where for 19 years he held a broad range of marketing, sales,
technology, and business development leadership positions. His AT&T career culminated as the Director of their Malcolm Baldrige National Quality Award winning Consumer Laboratory, the Marketing Sciences Center of Excellence at AT&T Bell Laboratories. Then at RR Donnelley (RRD), he was Senior Vice President of marketing, technology, and business development for Donnelley’s Financial Services Business unit. He also launched RRD’s multichannel healthcare and financial Benefits Communications Services (BCS) business group and served as a board member of MedAccess Corporation, a healthcare and wellness information and transaction online portal business in which the BCS group had a majority equity position. John then served as President and CEO of the Yellow Pages Publishers Association, which was rebranded as the Local Search Association. Prior to being named CEO of DMA, John co-founded Greco Associates with his wife Carol, which he rejoined in 2010.

John is recognized as a thought leader in value creation at the intersection of marketing, technology, and business development; and nonprofit, association, and federation management. He served on the boards of the Ad Council, Advertising Week, ProLiteracy Worldwide, Literacy Volunteers of America, Alliance for Learning, and Interclass as well as on the advisory boards of Brilig, an online data exchange acquired by Merkle and then Personify, an association and donor management system provider.

John also served on the Council of Better Business Bureaus’ National Advertising Review Council (NARC) and the U.S. Chamber of Commerce Association Committee of 100. John was a trustee of Monmouth University where he was Chairman of the Admissions and Enrollment Committee and a member of the Executive, Advancement, Athletics, and Presidential Search Committees.

John currently is Senior Advisor to Opentopic, an IBM partner, with their Sia with Watson™ cognitive
digital marketing platform. He also serves on the advisory board of Blue Sky Broadcast, a provider of
learning technologies that include a proprietary learning management system and virtual event services.

He holds an MBA from Columbia University and a Bachelor of Science in Electronic Engineering from
Monmouth University both with honors.

 Ross Koppel, PhD

Ross Koppel, PhD, FACMI:    Professor Koppel is a leading scholar of healthcare IT and of the interactions of people, computers and workplaces. His articles in JAMA, JAMIA, Annals, NEJM, Health Affairs, etc are considered seminal works in the field. Professor Koppel is on the faculty of the Sociology Department, University of Pennsylvania and on the faculty of the Medical School at UPenn, where he is the Principal Investigator of the Study of Hospital Workplace Culture and Medication Error. Koppel is also a Senior Fellow of the Leonard Davis Institute at Penn’s Wharton School. In addition, Dr. Koppel is the Internal Evaluator of Harvard Medical School’s project to create a new HIT architecture, and is a co-investigator of the National Science Foundation Project on Safe Cyber Communication and Smart Alerts in Hospitals. At the American Medical Informatics Association, he is also past chair of the Evaluation Working Group and a member of the Usability Task Force. Professor Koppel focuses on the use of computer system in situ. His work combines ethnographic research, extensive statistical analysis, surveys, and usability studies. Recently he coauthored the AHRQ Guide to reducing unintended consequences of HIT, www.ucguide.org. His newest book, First Do Less Harm: Confronting the Inconvenient Problems of Patient Safety (Cornell University Press) was published in May of 2012.

Scott Monteith, MD

Scott Monteith, MD, is a graduate of the University of Michigan and Michigan State University. He was chief resident in his psychiatric residency, is board-certified in psychiatry, Fellow of the American Psychiatric Association and Vice President of the Michigan Psychiatric Society. He is a Clinical Assistant Professor in the departments of Psychiatry and Family Medicine at Michigan State University, has worked with his local community mental health center for over 20 years, and is a founder of Behavioral Medicine Associates, PLLC.

Dr. Monteith’s interest in health information technology (HIT) spans 25 years. He was appointed to three consecutive terms by Michigan’s Governor Granholm to the Controlled Substances Advisory Commission which oversees the Michigan Automated Prescription System, a member of the first Business Operations workgroup of the Michigan Health Information Network, consultant in the area of medical malpractice risk management as it relates to HIT, and CCHIT Juror. He extensively uses HIT in his work. Health data privacy is one of his primary concerns.

Andy Oram

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 software engineering, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about 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. His web site is
http://www.praxagora.com/andyo/.

Frank Pasquale, JD

Frank Pasquale’s research agenda focuses on challenges posed to information law by rapidly changing technology, particularly in the health care, internet, and finance industries. He has published over 30 scholarly articles, and his book The Black Box Society: The Hidden Algorithms Behind Money and Information will be published by Harvard University Press in Fall, 2014. His article Grand Bargains for Big Data: The Emerging Law of Health Information offers a broad overview of the opportunities and perils posed by the growing use of predictive analytics in the medical field.

Pasquale graduated summa cum laude from Harvard University, received an MPhil at Oxford University as a Marshall Scholar, and received his JD from Yale Law School. He has been a Visiting Fellow at Princeton’s Center for Information Technology, and a Visiting Professor at Yale Law School and Cardozo Law School. He was a Marshall Scholar at Oxford University. He has testified before the Judiciary Committee of the House of Representatives, appearing with the General Counsels of Google, Microsoft, and Yahoo. He has also presented before a Department of Health & Human Services/Federal Trade Commission Roundtable (on personal health records) and panels of the National Academy of Sciences (on ubiquitous sensor networks and the internet of things).

Pasquale is an Affiliate Fellow of Yale Law School’s Information Society Project. He has been named to the Advisory Board of the Electronic Privacy Information Center. He has served on the executive board of the Health Law Section of the American Association of Law Schools (AALS), and has served as chair of the AALS section on Privacy and Defamation. He has blogged at Concurring Opinions since 2006, and he also writes at Balkinization, Madisonian, Health Reform Watch, and the Health Law Profs Blog. He has been quoted in the Financial Times, New York Times, Economist, CNN, and many other media outlets, and has written for the Boston Review.

Marc Rotenberg, JD, LLM

Marc Rotenberg is President and Executive Director of the Electronic Privacy Information Center (EPIC) in Washington, DC. He teaches information privacy and open government at Georgetown Law and frequently testifies before Congress on emerging privacy and civil liberties issues. He testified before the 9-11 Commission on “Security and Liberty: Protecting Privacy, Preventing Terrorism.” He has served on several national and international advisory panels, and currently serves on expert panels for the National Academies of Science and the OECD. He has authored many amicus briefs for federal and state courts. He is a founding board member and former Chair of the Public Interest Registry, which manages the .ORG domain. He is co-editor of “Privacy in the Modern Age: The Search for Solutions” (The New Press 2015) and (with Anita Allen) “Privacy Law and Society” (West 2016). He is a graduate of Harvard College and Stanford Law School, and received an LLM in International and Comparative Law. He served as Counsel to Senator Patrick J. Leahy on the Senate Judiciary Committee after graduation from law school. He is the recipient of several awards, including the World Technology Award in Law, the American Lawyer Award for Top Lawyers Under 45, the Norbert Weiner Award for Social and Professional Responsibility, and the Vicennial medal from Georgetown University for distinguished service. He was named one of the top lawyers in America in 2014 by Lawdragon.

Mark Rothstein, JD

Mark A. Rothstein is the Herbert F. Boehl (pronounced “bail”) Chair of Law and Medicine and Director of the Institute for Bioethics, Health Policy, and Law at the University of Louisville School of Medicine.

He received a B.A. from the University of Pittsburgh and a J.D. from Georgetown University.

Professor Rothstein has concentrated his research on health privacy, bioethics, genetics, and public health. From 1999-2008, he was a member of the National Committee on Vital and Health Statistics (NCVHS), where he chaired the Subcommittee on Privacy and Confidentiality. NCVHS is the statutory advisory committee to the Secretary of Health and Human Services on health information policy. He is a past president of the American Society of Law, Medicine and Ethics, an elected member of the American Law Institute, and an elected fellow of the Hastings Center.

He currently serves as Department Editor for Public Health Ethics and Law of the American Journal of Public Health. Since 2000, he has written a regular column on bioethics for the Journal of Law, Medicine and Ethics.

Professor Rothstein is the author or editor of 19 books and over 200 book chapters and articles. Among his many honors, he was a 2013 recipient of the Louis D. Brandeis Privacy Award from Patient Privacy Rights.

Shahid Shah

Shahid N. Shah is an internationally recognized and influential healthcare IT thought leader who is known as “The Healthcare IT Guy” across the Internet. He is a technology strategy consultant to many federal agencies and winner of Federal Computer Week’s coveted “Fed 100″ award given to IT experts that have made a big impact in the government.

Shahid has architected and built multiple clinical solutions over his almost 20 year career. He helped design and deploy the American Red Cross’s electronic health record solution across thousands of sites; he’s built several web-based EMRs now in use by hundreds of physicians; he’s designed large groupware and collaboration sites in use by thousands; and, as an ex-CTO for a billion dollar division of CardinalHealth he helped design advanced clinical interfaces for medical devices and hospitals. Shahid also serves as a senior technology strategy advisor to NIH’s and TATRC’s SBIR/STTR program hel ping small businesses commercialize their healthcare applications.

Shahid runs three successful blogs. At http://shahid.shah.org he writes about architecture issues, at http://www.healthcareguy.com he provides valuable insights on how to apply technology in health care, at http://www.federalarchitect.com he advises senior federal technologists, and at http://www.hitsphere.com he gives a glimpse of the health-care IT blogosphere as an aggregator.

Latanya Sweeney, PhD

Latanya Sweeney, PhD is the Director and founder of the Data Privacy Lab at Harvard University. The Lab, formerly at Carnegie Mellon, works with real-world stakeholders to solve today’s privacy technology problems. Dr. Sweeney, Professor of Government and Technology in Residence at Harvard, previously a Distinguished Career Professor of Computer Science, Technology and Policy at Carnegie Mellon University, was recently appointed to the Privacy and Security Seat of the Federal HIT Policy Committee, the group responsible for advising ONC on policy for the new national health information infrastructure.

Dr. Sweeney’s work involves creating technologies and related policies with provable guarantees of privacy protection while allowing society to collect and share person-specific information for many worthy purposes. She has made numerous discoveries related to identifiability and privacy technologies and she has had significant impact on American privacy policy. Her work has received awards from numerous organizations, including the American Psychiatric Association, the American Medical Informatics Association, and the Blue Cross Blue Shield Association.

Dr. Sweeney’s work has appeared in hundreds of news articles, numerous academic papers, and was even cited in the original publication of the HIPAA Privacy Rule and the Health Breach Regulation. Companies have licensed and continue to use her privacy technologies. Dr. Sweeney received her PhD in computer science from the Massachusetts Institute of Technology in 2001. Her undergraduate degree in computer science was completed at Harvard University where she graduated cum laude. More information about Dr. Sweeney is available at her website latanyasweeney.org.

 Nicolas P. Terry, JD

Nicolas Terry is the Hall Render Professor of Law at the Indiana University Robert H. McKinney School of Law. He serves as Director of the Hall Center for Law and Health. Professor Terry teaches Torts, Products Liability, Health Information Technology, Law & Science, and Health Care Quality & Safety. Educated at Kingston University and the University of Cambridge, Professor Terry began his academic career as a member of the law faculty of the University of Exeter in England before joining the faculty at Saint Louis University School of Law. From 1996-1997 he was Director of Legal Education at LEXIS-NEXIS. He has been a Senior Fellow at Melbourne Law School and held visiting faculty positions at the law schools of Santa Clara University, the University of Missouri-Columbia, Washington University, and the University of Iowa. From 2000-08 Professor Terry served as co-director of Saint Louis University’s Center for Health Law Studies and from 2008-10 as the School of Law’s Senior Associate Dean. Professor Terry’s research interests lie primarily at the intersection of medicine, law, and information technology. His recent scholarship has dealt with health privacy, social media and health, big data, and health care fragmentation. He is one of the permanent bloggers at HealthLawProf and at Harvard Law School’s Bill of Health and his recent publications are available at http://ssrn.com/author=183691.

Patsy Thomasson

Patsy Thomasson is the Chief of Staff of the Washington, DC office of the Ben Barnes Group. Since 2002, Patsy has overseen daily operations of the Washington office while managing client relations and communications with Capitol Hill. Among the greatest achievements during her BBG tenure are successfully coordinating the creation of the Beaumont Foundation of America and assisting in the efforts to obtain funds for the Southeast Texas Recovery. Patsy has worked at the Department of State managing embassies across the world, and was a veteran of the Clinton White House.

Patsy serves as an executive decision maker on PPR’s Advisory Board.  She shapes and approves the foundation’s strategies, reviews results, and helps set the overall direction of the organization.