On May 7, 2014, the FTC hosted the latest seminar in their Spring Privacy Series to address the status of Consumer Generated and Controlled Health Data and relate results of recent FTC studies on the topic.  Consumers are embracing new technologies, particularly in the fitness domain and are generating vast amounts of “health data” both intentionally and unwittingly.  These new advances offer significant potential benefits, but also pose some risks.  For example, many consumers believe their data privacy rights are protected under the Health Insurance Portability and Accountability Act of 1996 (“HIPAA”); however, certain modern methods of obtaining this data expand into unregulated areas.  There is a general consensus among government, industry, and public thought that such data is sensitive and confidential, although the rapid expansion in types and amounts of such data may call for new legal steps to protect it, experts believe.

The FTC observed that the benefits of consumer generated health data abound.  These benefits range from the monitoring of fitness goals on a variety of mobile applications and devices; to increasing efficiencies in finding new patients for clinical trials; to communicating health records from a patient to practitioner.  The advent of such data and related applications offer society new avenues of efficiency and information which, over time, can transform both the marketplace and the public health.  Yet, consumers have also raised related concerns, including: embarrassment from mistakenly reporting private activity; safety, by mistakenly broadcasting one’s schedule to the public; and employment and insurability, to the extent wellness data is incorporated into health insurance schemes to reward those who are fit.

A lesser explored area is use of such data by third parties.  Latanya Sweeney, the chief technologist at the FTC, suggested more transparency would be useful in this area.  A Harvard study, which she oversaw, revealed that apart from the typical doctor-patient relationship, which is covered by HIPAA confidentiality protections, consumer health data now flows to and among many third party organizations — many of which are outside the privacy regime afforded by HIPAA.  She noted that 33 states sell consumer health data in one form or another, but found that only three of the 33 states actually conformed with HIPAA’s data standards.  However, it was also noted that for de-identified health data (health data that has been stripped of information such as names, addresses, social security numbers, etc.), statute or regulation does not generally apply.  Regulators have articulated a risk that others may be able to re-identify certain data.  In fact, in a study based on health information released by the state of Washington in 2011, Ms. Sweeney was able to re-identify patients in 45% of the examined cases simply by cross-referencing publically available de-identified health data with news media.

A separate study presented by FTC attorney Jared Ho examined the data sharing by certain mobile applications.  The study focused on 12 health-related mobile applications, including two daily health habit tracking applications linked to wearable devices, although no applications were identified by name.  This project was meant to represent a small snapshot in time.  Mr. Ho noted that “[w]e were as permissive as possible, meaning that if an app asked us for permission to access a certain feature or to sync with another app, we always accepted and opted in.”

The Workshop highlighted that mobile health and fitness applications provided a wide range of user data to third-party vendors, including, but not limited to identifying information.  In this case, 18 third parties were shown to have received device-specific identifiers, 14 third parties received consumer-specific identifiers, and 22 parties received other health information.  Overall, the study found that the 12 applications surveyed transmitted information to 76 different third parties, with many of those third parties receiving information from multiple applications.  This result duplicated the findings of earlier studies in the industry, such as a 2013 Privacy Rights Clearinghouse study.  Mr. Ho cautioned that there are “significant policy implications where health routines, dietary habits, and symptom searches are capable of being aggregated.”

Later, in a panel discussion, government, industry, and non-profit representatives were also evocative in their praises for the new technologies.  For example, through study of these ever-increasing and diversifying data sets, researchers are beginning to apply newer data sources in their efforts to predict effective care efforts.  As such practices trend towards ubiquity, currently existing policies may need to shift and expand in order to ensure privacy and confidentiality.  But the panelists noted that both industry actors and the consumer play an equal role in fashioning – and accepting – related privacy policies.

Consumers are increasingly being placed at the center of health decisions, particularly as this goal is central to the Affordable Care Act.  Therefore, consumers have greater access to their health information and increased responsibilities to ensure its proper management.  Further, thought leaders can no longer agree on precisely what the term “health information” encompasses, thus adding greater complexity to its regulation and security.  New sources of information such as financial expenditures are increasingly used in the aggregate to inform doctors, companies, researchers, and others in the health sphere; thus, clearly identifying what constitutes a source of “health data” is proving to be difficult.  As panelist Joy Pritts of the Department of Health and Human Services noted in her closing remarks, everyone has a role to play in protecting this information, and much effort will be needed to ensure the proper protections and mindsets are introduced.

The Federal Trade Commission has invited those interested to submit comments on issues relevant to this workshop seminar.