2016 Agenda Post-Conference Events - Protected

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WEDNESDAY MAY 11, 2016


PRIVACY & SECURITY 2.0: FROM CHALLENGE TO ENABLER

Great Hall, Hubert H. Humphrey Building; U.S. Department of Health and Human Services (live broadcast)

Federal government employees qualify for no-cost registration to the Post-conference. See registration page for details.

8:00 am - 9:00 am
Registration Open/Coffee Served
9:00 am - 9:05 am
Welcome

Lisa Simpson, MB, BCh, MPH, FAAP
President and Chief Executive Officer, AcademyHealth

Speaker Bio

Dr. Lisa Simpson is the president and chief executive officer of AcademyHealth. A nationally recognized health policy researcher and pediatrician, her research focuses on improving the performance of the health care system and includes studies of the quality and safety of care, health and health care disparities and the health policy and system response to childhood obesity.

Dr. Simpson earned her undergraduate and medical degrees at Trinity College (Dublin, Ireland), a master's in public health at the University of Hawaii, and completed a post-doctoral fellowship in health services research and health policy at the University of California, San Francisco.
9:05 am - 9:20 am
Opening Comments

Speakers:
  • Lucia Savage, Esq., Chief Privacy Officer, Office of the National Coordinator for Health IT, US Department of Health and Human Services

    Speaker Bio

    Appointed Chief Privacy Officer at Office of the National Coordinator for Health Information Technology, Department of Health & Human Services in October 2014, Lucia Savage has been working on health privacy, transparency, and interoperable health information exchange since HIPAA was enacted. She previously served as General Counsel at Pacific Business Group on Health. And, as Senior Associate General Counsel at UnitedHealthcare she advised regarding large data transactions, health information exchange, and APCDs.

    Lucia has a BA with Honor from Mills College in Oakland, CA, and received her Juris Doctor summa cum laude from New York University School of Law.
  • Jocelyn Samuels, Office for Civil Rights, US Department of Health and Human Services

    Speaker Bio

    Jocelyn Samuels is the Director of the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS), where she leads enforcement of federal laws that help to ensure non-discrimination and equity in federally funded health and human services, and enforcement of the HIPAA Privacy, Security and Breach Notification Rules. Ms. Samuel previously served as the Acting Assistant Attorney General for Civil Rights at the U.S. Department of Justice (DOJ). Most immediately prior to her tenure with DOJ, Ms. Samuels was the Vice President for Education and Employment at the National Women's Law Center in Washington, D.C.
9:20 am - 10:20 am
Panel One: Planning for Health Information Privacy & Security in a Global Context

This session will focus on privacy and security considerations for companies operating in a global economy. Private sector speakers will lay out some of the key challenges of operating globally given differences in laws. Country representatives will then engage in a broader moderated discussion.

Speakers:
  • Stan Crosley, Drinker Biddle (Moderator)

  • Talia Agmon, Ministry of Health, Israel

    Speaker Bio

    Talia Agmon is the Senior Deputy to the Legal Advisor to the Israeli Ministry of Health. She is a graduate of the Hebrew University in Jerusalem School of Law (LL.B). Specializes in Patients' Rights and Bioethics, privacy of personal / medical information, including data collection, protection and sharing. Talia is a Member of the Israeli National Council for Digital Health and Innovation, and of the National Committee for medical research in Humans (NRB), and takes part in local and international discussions on innovative health governance and regulation, and the use of health information for better health and research.
    Presentation Material (Acrobat)

  • Sheila Colclasure, Acxiom Corporation

    Speaker Bio

    As Acxiom's Global Executive for Privacy and Public Policy, Sheila directs Acxiom's information use policies, compliance, consumer affairs, government affairs and related public relations for Acxiom's operations globally. Sheila has developed and implemented policy and practice for Acxiom's Privacy and Public Policy Program since 1998.

    Sheila participates in numerous domestic and international efforts to help develop effective public policy, establish industry best practices and achieve maximum harmonization of information policy across the world. With extensive knowledge of laws governing the collection and use of information worldwide, she is sought out by policy makers, regulators and government agencies for her views on the ethical use of data.
  • Katie Farrington, Department of Health, United Kingdom

    Speaker Bio

    Katie Farrington is Director for Digital and Data Policy in the Department of Health in England, responsible for data security, data sharing, the Department's business relationship with the Health and Social Care Information Centre, and digital support services. Katie is a career civil servant, and has spent much of her career in the Department for Education. Before joining the Department of Health, her last job was in Cabinet Office, where she led the public services team under the coalition Government and through the transition to the new Government, responsible for health, education and welfare policy.
    Presentation Material (Acrobat)

  • Krysten Jenci, US Department of Commerce

  • Paul Madden, Department of Health, Australia

    Speaker Bio

    Paul Madden holds the position of Deputy Secretary/Special Adviser, Strategic Health Systems and Information Management. His role includes supporting the Government in leading the national rollout of Digital Health initiatives including foundation technologies and related services across Australia, including the continued and improved operation of the My Health Record. He is also responsible for setting and operation of governance policies and processes for health performance and administrative data and information management. He is a member of the Departmental Executive Committee, the chair of the National E Health Working Group (EHWG) and the My Health Record Operations Management Committee, and a member of the Digital Health Implementation Taskforce Steering Committee. He was recently appointed to the Australian Digital Health Agency Board.

    Prior to joining the Department, Paul was Program Director of the Standard Business Reporting (SBR) Program led from the Australian Treasury from 2007 - 2010.
    Presentation Material (Acrobat)
10:20 am - 11:00 am
Panel Two: Whose Law Applies & How to Find Out?

Privacy & Security are transnational and mobile, and not always well understood. In this session, FTC, ONC, FDA and OCR will share resources for mobile developers in the U. S. economy. Other discussants will join the conversation, sharing experiences and noting challenges.

Speakers:
  • Lygeia Ricciardi, ClearVoice (Moderator)

    Speaker Bio

    Lygeia Ricciardi is a thought leader in digital health and consumer engagement. Her consulting practice, Clear Voice Consulting, focuses on helping clients succeed in engaging consumers more effectively in their health via digital tools.

    Previously, Lygeia established and directed the Office of Consumer eHealth at ONC, where she integrated the consumer perspective into a wide variety of federal policies and programs. She has also worked at Harvard Business School, the Markle Foundation, and the Federal Communications Commission.

    Lygeia is an advisor to organizations ranging from the American Heart Association to tech startups and Fortune 100 companies.
  • Loran Cook, Billians Health Data

  • Cora Tung Han, Federal Trade Commission

    Speaker Bio

    Cora Han is a senior attorney in the Federal Trade Commission's Division of Privacy and Identity Protection where she investigates and prosecutes violations of federal laws protecting the privacy and security of consumer information, and works on related policy matters. She organized the FTC's seminar on Consumer Generated and Controlled Health Data, and her law enforcement actions include the Commission's settlement with Facebook. In addition, Cora was one of the principal authors of the FTC's Health Breach Notification Rule. Prior to joining the FTC, Cora was an attorney with Wilmer Cutler Pickering Hale and Dorr LLP, where her practice focused on trademark, copyright, and media law.
  • Kathryn Marchesini, Office of National Coordinator

    Speaker Bio

    Kathryn Marchesini is the Deputy Director for Privacy Policy at the Office of the National Coordinator for Health Information Technology (ONC), U.S. Department of Health and Human Services (HHS). She advises the Chief Privacy Officer on health information privacy, security, and data stewardship legal and policy matters. Ms. Marchesini works closely with the HHS Office for Civil Rights (OCR) and other divisions of HHS, Federal agencies, and State programs. Ms. Marchesini leads a team instrumental in coordinating, formulating, and implementing national health policy and education initiatives pertaining to information exchange and use, mobile technology, and patient centered outcomes research (PCOR).
  • Bakul Patel, Food and Drug Administration

    Speaker Bio

    BAKUL PATEL is Associate Director for Digital Health, at the Center for Devices and Radiological Health (CDRH), at the Food and Drug Administration (FDA). Mr. Patel leads regulatory policy and scientific efforts at the Center in areas related to emerging and converging areas of medical devices, wireless and information technology. This includes responsibilities for mobile health, health information technology, cyber security, medical device interoperability, and medical device software.

    Mr. Patel is the FDA liaison between the Federal Communications Commission (FCC) and the Office of the National Coordinator (ONC). Since its inception in 2013, Bakul chairs the International Medical Device Regulators Forum (IMDRF) "software as a medical device" working group, a global harmonization effort.
  • Linda Sanches, Office for Civil Rights

    Speaker Bio

    Linda Sanches, MPH is the Senior Advisor for HIT and Privacy Policy in the Office for Civil Rights within the federal Department of Health and Human Services. She develops HIPAA security and privacy policy guidance and other assistance for entities developing and using health information technology. She also works to integrate health information privacy and security protections into governmental initiatives, coordinates HIPAA enforcement and policy projects and is a frequent collaborator with other agencies for outreach efforts. She serves as an ex officio member of federal Health IT Policy Committee workgroups. Her portfolio has included constructing the health app developer portal for communication between OCR and health IT stakeholders, building and administering the HIPAA Audit Program, developing the model Notices of Privacy Practices, creating the HIPAA enforcement training for state attorneys general, and producing de-identification guidance. Before joining OCR to stand up the HIPAA Privacy Rule enforcement program, she led teams forming and writing the rule. Ms. Sanches came to HHS as a Presidential Management Fellow based in the Office of the Assistant Secretary of Planning and Evaluation. Following a year as a health fellow in the US Senate, in ASPE she acted as lead staff on immigrant health policy development and then creation of the HIPAA Rules. She earned a Masters of Public Health in health policy and administration from UC Berkeley and an AB in human biology from Brown University.
    Presentation Material (Acrobat)
11:00 am - 11:10 am
Break
11:10 am - 12:00 pm
Panel Three: Pragmatic Approaches to Breach Prevention & Management

Breaches to data and systems continue to occur with increasing frequency. They can impede an organization's ability to deliver services and care, impact their reputation and regulatory standing, and shake the trust and confidence of patients and partners. In this session, panelists will discuss practical approaches to understanding, preventing and managing breaches, with an emphasis on sharing examples of what they are seeing in investigations, highlighting useful strategies, lessons, and resources, and correlating to international standards and activities.

Speakers:
  • Kevin Stine, National Initiative for Cybersecurity Education (Moderator)

    Speaker Bio

    Mr. Kevin Stine is the Chief of the Applied Cybersecurity Division in the National Institute of Standards and Technology's Information Technology Laboratory. In this capacity, he leads NIST collaborations with industry, academia, and government on the practical implementation of cybersecurity and privacy through outreach and effective application of standards and best practices.
  • Ty Faulkner, HIPAA -- HITECH Express

    Speaker Bio

    Ty Faulkner 25 years Healthcare, Pharma, & Health Information Technology. He's a speaker on "Technology's Role in Improving Global Health." Ty's a teaching instructor for Office of National Coordinator (ONC) -HHS, Health Information Technology (HIT) Workforce Development HIT Programs, he's a Graduate School University Professor of HIT. He operates non-profits including Healthcare Technology Access Foundation focused on data privacy & security standards adoption. Serves on standards committees NCPDP, HIMSS, ONC, eHI, AHIMA, CHIME, Patient Privacy Rights, honorably served US Marines, graduate of Indiana University, Michigan State University, ongoing studies Fairleigh Dickinson University. His passion is transforming minority health with HIT.
  • Nick Heesters, Office for Civil Rights

    Speaker Bio

    Nicholas Heesters is certified information privacy professional with over 25 years of experience supporting technology and information security efforts in many diverse industries including financial services, government, defense, education and healthcare. Mr. Heesters earned his Bachelor of Science in Computer Science from the University of Delaware, his Master of Engineering in Computer and Software Engineering from Widener University, and his Juris Doctor from the Widener University School of Law. Currently, Mr. Heesters is a Privacy and Security Specialist supporting HIPAA compliance and enforcement efforts with the Office for Civil Rights.
    Presentation Material (Acrobat)

  • Jeremy Maxwell, Office of the National Coordinator

    Speaker Bio

    Jeremy Maxwell is a senior technical advisor with the Office of the Chief Privacy Officer (OCPO) in the Office of the National Coordinator for Healthcare IT (ONC) in the US Department of Health and Human Services (HHS), where he is responsible for furthering the goals of ensuring that electronic health information is secure & protected in the interoperable learning healthcare system. Prior to joining ONC, Jeremy was responsible for application security, privacy, and compliance at a leading provider of electronic health record systems. Jeremy has his PhD from North Carolina State University.
  • Jillian Oderkirk, Organisation for Economic Co-operation and Development

    Presentation Material (Acrobat)

  • Laura VanDruff, Federal Trade Commission

    Speaker Bio

    Laura Riposo VanDruff is an Assistant Director of the Division of Privacy and Identity Protection at the Federal Trade Commission in Washington, D.C. An experienced litigator, she supervises investigations relating to violations of U.S. laws enforced by the Commission that relate to the privacy and security of consumer information. Ms. VanDruff also manages privacy and security initiatives at the Commission, including the Commission's Start with Security series. She recently served as trial counsel in an administrative litigation alleging that a medical testing laboratory failed to provide lawful security for consumers' personal information. Ms. VanDruff is a graduate of the University of Virginia School of Law.
12:00 pm - 1:00 pm
LUNCH (at HHS cafeteria)
1:00 pm - 2:15 pm
Panel Four A: Focus on Interoperability (35 minutes)

This session will focus on the critical role of interoperability -- both among health care providers and health plans, for appropriate reasons (treatment, payment, care coordination), and between providers and plans and patients.

Speakers:
  • Susannah Fox, HHS (Moderator)

    Speaker Bio

    Susannah Fox is the Chief Technology Officer of the U.S. Department of Health and Human Services (HHS). She is responsible for helping HHS leadership harness the power of data, technology, and innovation to improve the health and welfare of the nation. Together with the IDEA Lab team, she creates opportunities for entrepreneurship across the HHS workforce.

    Susannah most recently served as the Entrepreneur-in-Residence at the Robert Wood Johnson Foundation, helping to catalyze new ways to think about challenges and develop solutions that deliver impact.

    From 2000-14, Susannah was an Associate Director of the Internet Project at the Pew Research Center where she helped quantify and explain the social impact of the internet. She pioneered participatory research methods at the Center in order to explore how information technology and social media affect the health care industry and the consumer health care experience, with a special focus on people living with chronic and rare conditions.

    Susannah has a B.A. in Anthropology from Wesleyan University.
    Presentation Material (Acrobat)

  • Aja Brooks, Office of the National Coordinator

    Speaker Bio

    Aja currently serves as a Privacy Policy Analyst in Office of the Chief Privacy Officer (OCPO) within the Office of the National Coordinator for Health Information Technology (ONC). She leads the development of ONC's policy initiatives that support the exchange of electronic health information by educating stakeholders about the HIPAA Privacy Rule and its relationship to Interoperability.

    In her current capacity, she provides technical assistance through the HIT Resource Center and has coordinated the release of ONC's Medication Adherence Issue Brief, Updated Guide to Privacy & Security v. 2.0, and scenario-based fact sheets on permitted uses and disclosures.
  • Christina Heide, Office for Civil Rights

    Speaker Bio

    Christina M. Heide is the Senior Advisor for HIPAA Policy in the Office for Civil Rights (OCR) at HHS. OCR is responsible for administering and enforcing the HIPAA Privacy, Security, and Breach Notification Rules. Ms. Heide has worked on the HIPAA program for HHS since August 1999. As the Senior Advisor for Policy, she is the lead staff person responsible for rulemaking to modify the HIPAA Rules and the development of HIPAA guidance materials. Ms. Heide received her B.S. from Georgetown University and her J.D. from the Catholic University of America Columbus School of Law.
  • Anna McCollister-Slipp, Galileo Analytics

  • Drew Schiller, Validic

    Speaker Bio

    Drew Schiller co-founded Validic and serves as the CTO. At Validic, Drew leads the product and technology strategy, drives key initiatives, and works closely with senior executives at partner organizations to stay ahead of the technology curve. Drew serves on the Board of Directors for Validic, helping govern the corporate strategy, identity, and mission. He is a member of the Federal Advisory Committee joint HITPC/HITSC API Task Force on Meaningful Use 3. Additionally, he sits on the Consumer Technology Association (CTA) Health & Fitness Technology Board and contributes to CTA Health & Fitness subcommittees on Interoperability, Privacy and Security, and Standards. Drew is also a member of the eHealth Initiative Leadership Council and participates in the initiative's Business and Clinical Motivators and Interoperability working groups. Before co-founding Validic, Drew started and managed an award-winning web development firm for eight years. He also previously founded and exited a niche dietary nutrition website for patients with celiac disease.
Panel Four B: Staying in the Lines While Out of Bounds - Best Practices for Building Public Trust in Consumer Tools (35 minutes)

This session will highlight the need - and feature best practices for privacy to build trust in consumer tools, both HIPAA covered and non-HIPAA covered.

Speakers:
  • Marc Groman, Office of Management and Budget (Moderator)

    Speaker Bio

    Marc Groman serves as the Senior Advisor for Privacy, Office of the Director, Office of Management and Budget, Executive Office of the President. In his current role Mr. Groman reports to the Director of OMB, as well as working with the Office of Information and Regulatory Affairs, the Office of E-Government and Information Technology and OMB's legal teams.

    As the Senior Federal Privacy lead Mr. Groman is focusing on a number of privacy issues, including how data is collected, stored and secured. Mr. Groman will also advise on how information is used by agencies and disseminated, both within government and without.

    Mr. Groman leads the new established Federal Privacy Council in order to set the direction of the Federal Privacy programs.
  • Christopher Bradley, Mana Health

    Speaker Bio

    Chris Bradley, CEO and Co-Founder: Founder of Mana Health, Chris has lead the company to win multiple state-level contracts including work with HASA, the first official HIE in Texas, and NYeC, the New York eHealth Collaborative for the Patient Portal for the State of New York NY. Under his direction, Mana developed award-winning consumer experience tools while maintaining strict requirements for HIPPA Compliance and ensuring his products met Meaningful Use. In 2013, Mana received 1st Place Winner for the New York Patient Portal Design Competition. Chris has been invited to speak at TEDxNYU and has been the recipient of numerous awards, including the NYU Presidential Service Award, the Harold Hertzberg Commencement Award, and is a Kairos 50 Winner. He holds an M.S. in Computer Science from NYU School of Engineering and a B.A. in Neuroscience and Cell Biology from Rutgers University.
  • Cora Tung Han, Federal Trade Commission

    Speaker Bio

    Cora Han is a senior attorney in the Federal Trade Commission's Division of Privacy and Identity Protection where she investigates and prosecutes violations of federal laws protecting the privacy and security of consumer information, and works on related policy matters. She organized the FTC's seminar on Consumer Generated and Controlled Health Data, and her law enforcement actions include the Commission's settlement with Facebook. In addition, Cora was one of the principal authors of the FTC's Health Breach Notification Rule. Prior to joining the FTC, Cora was an attorney with Wilmer Cutler Pickering Hale and Dorr LLP, where her practice focused on trademark, copyright, and media law.
  • Erin Mackay, National Partnership for Women and Families

    Speaker Bio

    Erin Mackay is the Associate Director of Health Information Technology Policy and Programs at the National Partnership for Women & Families. Erin manages the Consumer Partnership for eHealth, a coalition of consumer and patient advocacy organizations. Erin also coordinates the GetMyHealthData campaign, a national campaign which helps patients gain access to their health information in electronic formats, offers educational resources to patients and providers, and advocates for advancements in policy and practice. In these roles, Erin advocates for health IT policies that enhance patient access to and use of health data, facilitate care coordination and communication, and improve health outcomes.
  • Jules Polonetsky, Future of Privacy Forum

    Speaker Bio

    Jules serves as CEO of the Future of Privacy Forum, a Washington, D.C.-based think tank that seeks to advance responsible data practices. FPF is supported by the chief privacy officers of more than 110 leading companies, several foundations, as well as by an advisory board of comprised of the country's leading academics and advocates. FPF's current projects focus on Big Data, Mobile, Location, Apps, the Internet of Things, Wearables, De-Identification, Connected Cars and Student Privacy.

    Jules previous roles have included serving as Chief Privacy Officer at AOL and before that at DoubleClick, as Consumer Affairs Commissioner for New York City, as an elected New York State Legislator and as a congressional staffer, and as an attorney.

    Jules serves on the Advisory Board of the Center for Copyright Information. He has served on the boards of a number of privacy and consumer protection organizations including TRUSTe, the International Association of Privacy Professionals, and the Network Advertising Initiative. From 2011-2012, Jules served on the Department of Homeland Security Data Privacy and Integrity Advisory Committee.

    Jules is a regular speaker at privacy and technology events and has testified or presented before Congressional committees and the Federal Trade Commission.
2:15 pm - 3:15 pm
Panel Five: From Hotel California to Free Bird: In Search of Privacy Constructs that will Liberate Data

Despite years of constant policy movement in favor of data reporting and sharing, the actual flow of shared data remains thin. Not only does data sharing involve a shift in power and control away from traditional players (and toward decentralized networks of participants and data scientists), but it also requires shifts in our conceptions of how privacy risk relates to data beneficence. This session will push discussants to think about how to evaluate balance between existing models for protection and benefit in the age of big data, and to consider models that facilitate the uses we value and need.

Speakers:
  • John Wilbanks, Sage (Moderator)

  • Christy Collins, Mother and M-CM Patient Advocate

    Speaker Bio

    Christy Collins is a founder of the M-CM Network, a rare disease non-profit formed with the goal of collecting patient data to advance research about macrocephaly-capillary malformation syndrome. Her daughter was born with M-CM in 2009. Christy's professional background is in web development.
  • Andy Faucett, Geisinger

    Speaker Bio

    Andy Faucett directs community engagement and education for Geisinger's biobank, the MyCode® Community Health Initiative. His research focuses on genetic testing oversight, ethical and consent issues, healthcare provider education, genetic counseling, and patient registries. He leads the registry and ELSI sections of ClinGen. He is a PA licensed Genetic Counselor. He serves as Chair of the Public Policy Committee for the NSGC. He has served on the NSGC, ABGC, and NCHPEG boards. He held positions at Emory University School of Medicine; Baylor College of Medicine; Memorial Medical Center, Savannah, GA; and the CDC prior to Geisinger.
  • Deven McGraw, Office for Civil Rights

  • Dave Siedzik, Broad Institute
3:15 pm - 3:25 pm
Faculty Comments
3:25 pm - 3:30 pm
Closing Remarks and Adjourn

Alison Rein, MS
Senior Director, Evidence Generation and Translation, AcademyHealth

Speaker Bio

Ms. Rein is a Senior Director for Evidence Generation and Translation at AcademyHealth, where she directs several projects that investigate how new sources of data and expanded stakeholder engagement are helping to transform health, care and research.

Ms. Rein leads the Community Health Peer (CHP) Learning Program, a partnership with ONC to establish a national peer learning collaborative for 15 competitively awarded communities to address specified population health management challenges through increased sharing and use of electronic data.

Ms. Rein also overseas several projects on behalf of the Patient Centered Outcomes Research (PCORI), and served as principal investigator of the PCORI Pilot Project Learning Network, which facilitated collaboration among 50 pilot projects to advance the field of patient-centered outcomes research. She also leads the AcademyHealth Consumer Patient Research (CPR) Roundtable, and contributes to several projects that focus on building the data and human infrastructure needed to support patient-centered learning health systems.

Go to Agenda Presentations:
Preconferences | Day 1 | Day 2