Resolving tensions between privacy & utility of health data

When and how we ought to give up privacy of our health information in the setting of the COVID-19 is a regular topic of discussion, largely premised on the notion that giving up privacy is necessary for fighting the pandemic. We discuss approaches to data creation, storage, and analysis that disprove this premise by enabling us to have both data privacy and utility. Further, the discussion will elaborate on examples of how these approaches can be applied in healthcare today.

SPEAKERS Marielle S. Gross, MD, MBE is an OB/GYN bioethicist whose work focuses on the ethics of evidence in women’s healthcare with special attention to learning health systems, emerging information technologies and dismantling “prejudice based medicine.” She is currently completing a postdoctoral fellowship at the Johns Hopkins Berman Institute of Bioethics and looking forward to starting as an assistant professor at the University of Pittsburgh and UPMC in July 2020.

Vince Kuraitis JD, MBA is Principal and founder of Better Health Technologies, LLC (http://e-CareManagement.com). BHT consults in developing strategy, partne rships and business models with a unique focus on helping companies build platforms, networks and network effects . BHT’s clients -- both established organizations a nd early - stage companies -- include: Intel Digital Health Group, Philips Electronics, Office of the National Coordinator (ONC) for Health IT, Amedisys, Alere/RMD, Joslin Diabetes Center, Ascension Health System, Matrix Medical Network, Samsung Electronics , Siemens Medical Solutions, Medtronic, Varian Medical Systems, Disease Management Association of America, and many others. Following the path of many other industries, health care is transforming from “hoarding” to “sharing” health information and workf low. D igital networks, platforms and apps are disrupting proprietary, closed technologies and business models. The shift from hoarding to sharing is leading to the era of “st rategic openness” – where companies gain competitive advantage from sharing inform ation and workflow. Vince brings 30 + years health care experience in multiple roles: President, VP Corporate Development, VP operations, management consultant, and marketing executive. His consu lting and work projects span 150+ different organizations, including tech companies, hospitals, physician groups, IT, medical devices, pharma, health plans, disease management, home health, and others. Vince speaks frequently at industry conferences and corporate events. He has been th e opening keynote speaker at 11 Healthcare Unbound conferences and has spoken an average of 10 conferences per year over the past 15 years . He has extensive experience leading strategic planning retreats for Boards and physicians. Vince’s experience includes: Principal, Better Health Technologies (since 1997) ; President, Health Choice (medical call center), VP Corporate Development and VP Specialty Operations, Saint Alphonsus Regional Medical Center; Regional Director o f Marketing, National Medical Enterprises (hospital chain with 100 facilities); Senior Consultant, Amherst Associates, national health care management consulting company. His education includes MBA and JD degrees from UCLA, and a BS degree in business a dministration from USC. Vince is on the editorial advisory boards of Accountable Care News and Population Health News . He served as a Board member of the Collaborative Health Consortium . He served on the ASTM International E31 T echnical Committee on Healt hcare Informatics (CCR) . Vince is a member of the California State Bar (inactive). He also is on advisory boards for several early stage companies.

Robert Miller is the Director of Product Management and Strategy at ConsenSys Health, where he focuses on privacy preserving technologies and value-based care. He manages a weekly newsletter on emerging technologies in healthcare (https://bert.substack.com/) and previously founded a startup empowering patients with rare diseases to manage their health data.

Eric Tramel: I received my B.S. and Ph.D. degrees from Mississippi State University, both with distinctions, in 2007 and 2012, respectively. I conducted my dissertation work under the direction of Prof. James E. Fowler on the application of compressed sensing techniques to high-dimensional media, e.g. natural video, multiview image and video, light-field images, and hyperspectral imagery for geosciences. During my Ph.D. studies, I also worked as a research intern for Canon USA, Inc.’s research division in San Jose, CA, where my work lead to a patent for a novel lightfield acquisition system, for which I am listed as a co-inventor.