Health on the Go: Medical Apps, Privacy, and Liability
April 4, 2014
Five hundred million people will use a health app by 2015 and the use of health apps will increase by 25% yearly. But what are the privacy and legal implications of Health on the Go?
About the Conference
The digital world presents new opportunities to improve your health. It’s now possible for your every movement, every intonation in your voice, every phone call you dial or receive, and every website you visit to be tracked, documented and analyzed to create your health profile. From maximizing your personal health and identifying public health trends to fueling a new sector of the economy, health information from apps, social networks and games is shaping our lives. And as our digital health data grow, the need to address the legal, medical and social implications becomes increasingly important.
On Friday, April 4, IIT Chicago-Kent College of Law in partnership with UIC School of Public Health brought together medical app developers, lawyers, regulators and health care professionals to discuss privacy and policy considerations for a public increasingly dependent on "Health on the Go." The conference discussed the laws and regulations dealing with the collection and use of health information outside the health care system. It also addressed current federal and state investigations into data aggregation and medical apps.
Researchers, data aggregators, health care providers, public health professionals, pharmaceutical companies and marketers can predict—with high accuracy—everything from where the next flu outbreak will occur to when someone with bipolar disorder will have a manic episode. Predictors of health can be gleaned from non-medical information individuals disclose in mobile apps, games and social networks, as well as the passive data our mobile devices collect—including movement, geographic location, call registries and voice analysis. In addition to digital disclosures made for other purposes, people also increasingly use health and fitness apps which collect medically-related data more directly. Twenty-seven percent of internet users are self-trackers, developing online data sets of items such as their weight, food intake, physical activity, mood, blood glucose levels and medications.
Over half of smartphone owners use their devices to get health information and roughly one-fifth have health apps. Eighty percent of internet users have looked online for information concerning health, such as medical conditions, pregnancy, memory loss and medical test results. Of the 62% of U.S. adult internet users who use social networking sites, fifteen percent have found health information on a social network. Five million Facebook users in the United States have “liked” a health organization. The wealth of health information concerning individuals can be used to further a person’s health and other interests or it can be used to crush an individual’s opportunities.
There are a number of benefits of apps, social networks and games used for health purposes. These platforms can improve control of chronic health conditions, engage individuals in health promoting activities, provide support networks, act as information hubs and hold users accountable for their health. When the information is used collectively, it can improve the public’s health by informing policies and developing better treatment protocols. Tracing people’s movements and behavior patterns online and offline can be helpful to identify infectious disease outbreaks at quicker speeds than traditional reporting mechanisms; geographic clusters of non-communicable diseases; hotspots for asthma attacks; the impending onset of an episode of schizophrenia or depression; or a flare up of a patient’s irritable bowel syndrome. There are also risks: clinical and medical information can be inaccurate, conflicts of interest may remain concealed, health information may not remain private or anonymous, users can lose all control and ownership of their data and their digital data can be used against them.
Without adequate oversight and appropriate regulation, the risks go unaddressed. Even though federal and state laws have been implemented to safeguard our health information through policies such as the U.S. Health Insurance Portability and Accountability Act (HIPAA) and similar state laws, health disclosures on social networks, health-related games and most medical apps are not protected by these laws. The Food and Drug Administration (FDA) regulates a small subset of apps, including those that serve as an extension of a medical device. But the majority of health apps will fall through the regulatory cracks. The Federal Trade Commission (FTC) attempts to protect against fraud and misrepresentation, but has had little success in swaying industry to provide self-regulation. Laws and regulations fall short of protecting Americans.
Companies that collect, share and use digital health data expose consumers to serious risks to privacy. Flaws plague the current system with weak data security, convoluted privacy policies and confusing consumer opt-out tools. Targeted advertising hides under the guise of benefiting consumers by subsidizing free content and promoting an online market; but, consumers seem unaware of online tracking and data collection and an overwhelming majority of Americans disapprove of the current collection and disclosure of data practices.
Lisa Madigan, Illinois Attorney General
George Annas, JD, MPH
Chair of the Department of Health Law, Bioethics & Human Rights
William Fairfield Warren Distinguished Professor, Boston University
Lori Andrews, JD
Director, Institute for Science, Law and Technology
Distinguished Professor of Law, IIT Chicago-Kent College of Law
Sarah Blenner, JD, MPH
Director, Center for Diabetes Research and Policy, IIT Chicago-Kent College of Law
Ben Gerber, MD, MPH
Associate Professor of Medicine, University of Illinois College of Medicine
Erik Jones, JD
Director, Policy Bureau, Assistant Attorney General, Office of Illinois Attorney General Lisa Madigan
Scott A. Kamber, JD
Managing Partner, KamberLaw, LLC
M. Ellen Mitchell, PhD
Professor of Psychology and Interim Dean, IIT Lewis College of Human Sciences
Melanie Tiano, JD
Investigative Counsel, U.S. Senate Committee on Commerce, Science and Transportation
Yan Zhang, PhD
Assistant Professor, School of Information, University of Texas at Austin
President, Association for Competitive Technology (ACT)
Representing the App Community
William Kling, JD
Clinical Assistant Professor, Health Policy and Administration, University of Illinois-Chicago School of Public Health
Adjunct Professor, IIT Chicago-Kent College of Law
Richard Warner, JD
Faculty Director, Center for Law and Computers
Professor of Law, IIT Chicago-Kent College of Law
Please note that registration for this event is now closed.
For more information, contact Colleen Canniff at email@example.com.