U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES OFFICE OF THE NATIONAL COORDINATOR FOR HEALTH INFORMATION TECHNOLOGY ROUNDTABLE: PERSONAL HEALTH RECORDS UNDERSTANDING THE EVOLVING LANDSCAPE Federal Trade Commission Conference Center Washington, D.C. Friday, December 3, 2010 2 1 PARTICIPANTS: 2 Panel 1: 3 KATHY KENYON, Moderator Senior Policy Analyst, 4 Office of National Coordinator for Health Information Technology 5 COLIN EVANS 6 Chief Executive Officer, Dossia 7 TIM McKAY, Ph.D., CISSP Director of Digital Identify Services CISSIP, 8 Kaiser Permanente 9 LORI NICHOLS Director, HInet 10 GEORGE SCRIBAN 11 Senior Program Manager, Microsoft HealthVault 12 GREGORY STEINBERG, M.D. President and Chief Executive Officer 13 ActiveHealth Management (AETNA) 14 Panel 2: 15 WIL YU, Moderator Special Assistant of Innovations and Research 16 Office of the National Coordinator for Health Information Technology 17 STEPHEN DOWNS, S.M. 18 Assistant Vice President, 19 Robert Wood Johnson Foundation (RWJF) 20 DARCY GRUTTADARO, J.D. Director, National Alliance on Mental Illness 21 (NAMI) Child and Adolescent Action Center 22 JOHN MOORE Chilmark Research 3 1 PARTICIPANTS (CONT'D): 2 GAIL NUNLEE-BLAND, M.D., F.A.C.E., F.A.C.P. Interim Chief of Endocrinology, 3 Director of Diabetes Treatment Center, Howard University 4 DOUGLAS TRAUNER 5 Chief Executive Officer, TheCarrot.com 6 Panel 3: 7 JOY PRITTS, Moderator Chief Privacy Officer 8 U.S. Department of Health and Human Services 9 ROBERT GELLMAN, J.D. 10 JOSH LEMIEUX Director of Personal Health Technology, 11 Markle Foundation 12 LEE TIEN, J.D. Staff Attorney, Electronic Frontier Foundation 13 TRESA UNDEM 14 Vice President, Lake Research Partners 15 MATTHEW WYNIA, M.D., M.P.H. Director, The Institute For Ethics, 16 American Medical Association 17 Panel 4: 18 LESLIE FRANCIS, PH.D., J.D., Moderator Distinguished Professor of Law and Philosophy and 19 Alfred C. Emery Professor of Law, University of Utah 20 LORETTA GARRISON, J.D. 21 Senior Attorney, Bureau of Consumer Protection, Federal Trade Commission 22 4 1 PARTICIPANTS (CONT'D): 2 ADAM GREENE, J.D., M.P.H. Senior Health IT and Privacy Specialist 3 HHS Office for Civil Rights 4 JOANNE McNABB, CIPP/G, Chief, California Office of Privacy Protection 5 ROBERT HUDOCK, J.D. 6 Counsel, EpsteinBeckerGreen 7 FRANK PASQUALE, J.D. Schering-Plough Professor in Health Care 8 Regulation and Enforcement, Seton Hall Law School 9 NICOLAS P. TERRY, B.A. (HONS.) LAW, LL.M. Chester A. Myers Professor of Law, 10 Saint Louis University School of Law 11 12 * * * * * 13 14 15 16 17 18 19 20 21 22 5 1 P R O C E E D I N G S 2 (8:30 a.m.) 3 MS. PRITTS: Can I get everybody to take 4 their seats, please? 5 Welcome. It's good to see everybody 6 here this morning. I am glad that we had such a 7 good attendance for this event. We're very 8 excited about our program for today. We have -- 9 are we on the webcasting at this moment? 10 I'd also like to extend a welcome to 11 everybody who is listening over the Internet. It 12 greatly expands our audience, and we want to make 13 sure that we include you in all of our discussion 14 today. 15 We're here today to talk about personal 16 health records, understanding the evolving 17 landscape. Before we get started, I'm going to go 18 over the necessary housekeeping details here to 19 make sure everybody knows everything about what we 20 need to do in case of emergencies, personal or 21 otherwise. 22 So anyone who goes outside the building 6 1 without an FTC badge will be required to show your 2 ID again as well as go through all the security 3 again when you come back in. So if you leave, 4 you've got to go through the whole same process 5 when you come back in. 6 In the event of fire or evacuation -- 7 pay attention here -- of the building, leave the 8 building in an orderly fashion. Now, this looks 9 like a good group. I think you can follow 10 directions, so I'm pretty confident that we can do 11 this. 12 Once outside the building you need to 13 orient yourself to New Jersey Avenue. Across from 14 the FTC is Georgetown Law Center. Look to the 15 right front sidewalk, that's our rallying point. 16 Everyone will rally by floors. We'll all just 17 rally together, okay? And then we'll just make 18 sure that -- we'll try to make sure that everybody 19 is out. 20 In the event it's safer to remain 21 inside, you will be told where to go inside the 22 building -- that's a loaded question. 7 1 Okay, if you spot suspicious activity, 2 please alert security -- that's very suspicious 3 activity, not somebody who's swiping your pen, 4 okay? 5 The restrooms are located on this floor. 6 You go out these doors here. You go out the main 7 door that you walked in when you signed in and you 8 will see where the guards are. You just job a 9 little bit to the left and go down that hall and 10 you're down there. 11 We have breakfast items that are still 12 available until 9:00 a.m. Lunch items will be 13 available for purchase in the hallway from 11:45 14 to 1:45, and we are very grateful for the vendor 15 who came in to offer these items to us because it 16 was not an easy process, and so we are very 17 thankful for them who were willing to come in for 18 a relatively small crowd and provide this service 19 to us. 20 Importantly now, pretend like you're at 21 the movie theater and please turn off your cell 22 phone. Put it on vibrate or turn it off, and if 8 1 you need to use your phone, please go out in the 2 hall to do so and stand away from the door so that 3 it doesn't interrupt the proceedings. These 4 proceedings are being videotaped so not only will 5 you interrupt us now, you will interrupt us 6 forever on the website. And if I know your name, 7 I will say it. 8 WiFi is available in this conference 9 room, and you can see the registration for further 10 information. 11 Is there any other housekeeping detail 12 that anybody feels a pressing need to know right 13 now? 14 SPEAKER: Hash tag? Is there a Twitter 15 hash tag for the Roundtable? 16 MS. PRITTS: I'm sorry? 17 SPEAKER: Is there a Twitter hash tag 18 with the (inaudible)? 19 MS. PRITTS: Is there a Twitter? I 20 don't know the answer to that? 21 SPEAKER: PHRR. 22 MS. PRITTS: PHRR? 9 1 SPEAKER: Yes. 2 MS. PRITTS: There you go. Somebody in 3 the audience knew the answer. Good. I'm glad. 4 I'll get you for that, Steve, okay. 5 All right. So now we're ready to get 6 the show on the road, and it's going to be a 7 fascinating day talking about personal health 8 records. Here to welcome you this morning we are 9 very fortunate to have -- we're very fortunate to 10 have David Blumenthal, who has been leading the 11 Office of the National Coordinator for Health 12 Information Technology. 13 I've been at ONC now for since February, 14 and I will tell you that ONC is not an easy 15 organization to lead. It is like an Internet 16 startup company, but in addition to having all 17 those techie type of people, we have a whole 18 concentration of doctors and lawyers, and, you 19 know, I can't think of a more interesting mix to 20 have in one organization, all of whom are sure 21 they have the right solutions for the right 22 problems and they're all different. So it's a 10 1 very good, exciting challenge. And David has his 2 hands full on an hourly basis, and we're very 3 fortunate to have him lead us from being a very 4 small office to a much, much larger office in 5 these really exciting times. 6 So I'm going to turn it over to David to 7 make a few welcoming remarks. (Applause) 8 DR. BLUMENTHAL: Thank you, Joy. Thanks 9 to you and to all the ONC staff and colleagues 10 that have been organizing this activity today. 11 Thanks to all of you who have come. Joy is a 12 terrific asset for the ONC in terms of the privacy 13 and security, and other issues we have to deal 14 with. Her post, as many of you may know, was 15 created under the HITECH Act, the first time that 16 the Department of Health and Human Services has 17 had a chief privacy officer, and it's added 18 enormously to our ability to focus on these 19 terribly important issues and incorporate them 20 into our planning the way they should be. 21 This program is part of a 22 congressionally mandated activity for the Office 11 1 of the National Coordinator that we examine the 2 privacy and security concerns surrounding 3 non-HIPAA-covered entities. 4 You're having trouble hearing me? 5 SPEAKER: They just turned on the AC 6 (inaudible).