National Committee on Vital and Health Statistics Hearing on Privacy, Confidentiality, and Security Considerations for Data Collection and Use during a Public Health Emergency Transcript September 14, 2020, 9:30 a.m. – 5:15 p.m. ET VIRTUAL SPEAKERS NCVHS Members Name Organization Role Frank Pasquale University of Maryland Carey Chair School of Law William W. Stead Vanderbilt University Chair, Full Committee Rebecca Hines NCHS Executive Secretary Denise Chrysler University of Michigan School of Member Public Health Jacki Monson Sutter Health Member James J. Cimino University of Alabama at Member Birmingham Jamie Ferguson Kaiser Permanente Member Melissa M. Goldstein The George Washington Member University Nicholas L. Coussoule BlueCross BlueShield of Member Tennessee Richard W. Landen Individual Member Vickie M. Mays UCLA Member Wu Xu University of Utah Member NCVHS Staff Name Organization Role Rachel Seeger HHS Office for Civil Rights Lead Staff Maya Bernstein ASPE/OSDP Staff Geneva Cashaw NCHS Staff Marietta Squire NCHS Staff Presenters Name Organization Role Ashkan Soltani Independent Researcher National Committee on Vital and Health Statistics, September 14, 2020 Subcommittee on Privacy, Confidentiality and Security 1 Commissioner Allison Arwady Chicago Department of Public Commissioner Health Robert Grossman University of Chicago Chief Research Informatics Officer, Biological Sciences Division Danielle Allen Harvard University Professor John W. Loonsk, M.D. John Hopkins University Professor Kate Goodin Tennessee Department of Director, Surveillance Systems Health and Informatics Program, Communicable and Environmental Diseases and Emergency Preparedness Stacey Mondschein Katz, Esq. Maine Department of Health Director of Healthcare Privacy and Human Services and Human Protections Administrator Bryant Thomas Karras, M.D. Office of the State Health Chief Informatics Officer Officer, Washington State Department of Health Mary L. Gray Microsoft Research Senior Principal Researcher Sean Martin McDonald Centre for International Senior Fellow Governance Innovation C. Jason Wang, MD, PhD Center for Policy, Outcomes and Director Prevention, Stanford University National Committee on Vital and Health Statistics, September 14, 2020 Subcommittee on Privacy, Confidentiality and Security 2 Welcome and Roll Call Rebecca Hines: Well, good morning, everyone, and welcome to the National Committee on Vital and Health Statistics, NCVHS, meeting of the Subcommittee on Privacy, Confidentiality and Security. I hope everyone is staying safe and well. My name is Rebecca Hines. I serve as the executive secretary and designated federal officer for the committee. Today, the committee will be hearing testimony regarding privacy, confidentiality, and security considerations for data collection and use during a public health emergency. We are grateful to our guest speakers invited here today to give input to the committee as it works to develop methods and approaches for handling data responsibly during pandemics such as the one we are in. Before we get started, take care of our roll call duties. Please remember to state your name, the organization you are with and your role on the committee and any conflicts beginning with the chair of the subcommittee, Frank Pasquale. Frank Pasquale: Thanks very much, Rebecca. My name is Frank Pasquale. I am chair of the Subcommittee on Privacy, Confidentiality and Security and a member of the Full Committee and no conflicts. Rebecca Hines: Bill Stead. Bill Stead: Hi. This is Bill Stead. I am chair of the Full Committee. I am from Vanderbilt University Medical Center and I have no conflicts. Rebecca Hines: Denise Chrysler. Denise Chrysler: Hi. I am Denise Chrysler. I work with the University of Michigan School of Public Health. I am with the Network for Public Health Law. I am a member of the Full Committee. I also serve on the Subcommittee on Privacy, Confidentiality and Security. I have no conflicts. Rebecca Hines: Jacki Monson. Jacki Monson: Good morning. Jacki Monson. Sutter Health. A member of the Full Committee and a member of the Subcommittee on Privacy, Confidentiality and Security and no conflicts. Rebecca Hines: Jamie Ferguson. National Committee on Vital and Health Statistics, September 14, 2020 Subcommittee on Privacy, Confidentiality and Security 3 Jamie Ferguson: Good morning. Jamie Ferguson, Kaiser Permanente, member of the Full Committee, member of the Standards Subcommittee, no conflicts. Rebecca Hines: Jim Cimino. Jim Cimino: Hi. Jim Cimino. University of Alabama Birmingham, member of the Full Committee, member of the Subcommittee on Standards, no conflicts. Rebecca Hines: Melissa Goldstein. Melissa Goldstein: Good morning. I am Melissa Goldstein. I am on the faculty at George Washington University. I am a member of the Full Committee and also a member of the Privacy, Confidentiality and Security Subcommittee and I have no conflicts. Rebecca Hines: Nick Coussoule. Nick Coussoule: Good morning. I am Nick Coussoule with BlueCross BlueShield of Tennessee, member of the Full Committee, the Privacy, Security and Confidentiality Subcommittee and the Standards Subcommittee. I have no conflicts. Rebecca Hines: Rich Landen. Rich Landen: Good morning. Rich Landen. No affiliation. A member of the Full Committee, co-chair of the Subcommittee on Standards, no conflicts. Rebecca Hines: Wu Xu. Wu Xu: My name is Wu Xu. Adjunct faculty for University of Utah. I am a member of the Full Committee. I have no conflicts. Rebecca Hines: Vickie Mays. Vickie Mays: Good morning. I am with the University of California Los Angeles. I am a member of the Subcommittee. I am a member of the Full Committee. And I have no conflicts. Rebecca Hines: Are there any other members that I have missed? Okay. Let us turn it over to our lead staff. Rachel Seeger. Rachel Seeger: Rachel Seeger, HHS Office for Civil Rights and lead staff to the Subcommittee on Privacy, Confidentiality and Security. National Committee on Vital and Health Statistics, September 14, 2020 Subcommittee on Privacy, Confidentiality and Security 4 Rebecca Hines: Maya Bernstein. Maya Bernstein: Good morning. I am Maya Bernstein. I work in the Office of the Assistant Secretary for Planning and Evaluation. I am lead staff to the executive director of the Committee and a liaison to the Subcommittee. Rebecca Hines. Great. Thanks, all. And I just want to acknowledge our two committee staff, Marietta Squire and Geneva Cashaw. I believe that is the end of roll call. I just wanted to say that before we get started, there will be a public comment period later this afternoon. It is on the agenda for 3:45 p.m. Eastern and we will do our best to start then if you plan to speak during that public comment period. With that, let us turn it over to our Chair Frank Pasquale. Opening Remarks Frank Pasquale: Thanks so much, Rebecca. I should have said during my introduction that I am at Brooklyn Law School and I am coming to you from Brooklyn today. And so today we are convening a number of experts and we could not have done it without just extraordinary support from the Full Committee and from staffers delegated to our Subcommittee on Privacy, Confidentiality and Security. So, I first just wanted to thank all members of the subcommittee. I wanted to thank our Full Committee and the Chair Bill Stead for helping guide us in the Full Committee toward this inquiry through the year. It has been a very challenging year in terms of planning, and I think it is very good that we are at this point now. And I also just wanted to say an enormous thanks first to Rachel Seeger for her really extraordinary efforts in terms of convening the experts that you see today and reaching out and ensuring that we have a really number of voices from a number of different fields in a truly interdisciplinary approach here. And of course, to Rebecca and to Maya, Rebecca Hines, and Maya Bernstein, who have been with us through the whole process. And just to introduce in terms of the structure of my opening remarks and of my overall – of the overall – I am getting a little bit of feedback. I do not know if everyone is muted. Just in terms of the structure of the overall approach today. National Committee on Vital and Health Statistics, September 14, 2020 Subcommittee on Privacy, Confidentiality and Security 5 Essentially, one thing that we are going to be going through is that we have a lot of objectives for the meeting at the broadest level. Our objectives are first to understand current policies and practices involving data collection and use with respect to privacy and security during the COVID-19 public health emergency. That is our first objective on a very broad level to understand these policies and practices because when there is something of such epical and world historical change and impact as a pandemic of this nature, there are going to be definite impacts on policies and practices. Second, we are trying to understand the challenges and potential areas of clarification in light of these practices, new and emerging technology developments and new and evolving policy directions. And that is an area where the diversity of governance both within the United States and internationally can be both a challenge and an opportunity, a way of understanding what has worked, what has failed, and how do we move beyond certain failures to what has ultimately worked. Also, to identify best practices in areas where additional technical assistance or guidance may be useful. One of the things that is so helpful to our National Committee on Vital and Health Statistics in which I saw the Standards Subcommittee last month and which I have seen throughout my time on the committee is its openness to expert advice. And I think that this is a real great opportunity to serve as a transmission develops between the thinkers and doers in civil society and academia and industry that are really trying to increase our understanding and effectiveness in combatting the pandemic and to those who are making decisions in Congress, in the Executive Branch, at state and local levels.