Is Your Digital Footprint Revealing Private Health Information?

If you use a cell phone, credit cards, websites, search engines, or a medical device, you might be leaving a great deal of private health information (PHI) in your wake, according to a report from the California Healthcare Foundation (CHF). Each day, most of us leave behind a trail of data that can be used to construct a detailed health profile, even if we didn’t intend to give up anything. As health care becomes more intertwined with digital applications, the Internet, and smart phones, new privacy issues are developing as private health information leaks out into the internet. According to the report, the data is incredibly useful and already has served to advance health care in meaningful ways. However, the CHF believes privacy regulations and consumer education need to quickly catch up with the changing health care landscape to address privacy issues that current regulation doesn’t account for.

Data

According to the CHF report, the amount of data related to health care is exploding. In general, consumer data is reaching untold heights; according to the CHF, data is now described in petabytes. A single petabyte is one quadrillion bytes, which the CHF says is enough space to store “the DNA of the entire population of the US, and then clone them twice.” The data exists because consumers are generating it everywhere they go. The CHF gives numerous examples of the sources of data including: web-based diabetes apps, web-based clinical trials, patient social networks, insurance-based wellness program apps, child health monitoring smartphone apps, Wi-Fi heart monitors, search engine queries, and posts to social networking sites. Even the Supreme Court recognized in its recent decision, Riley v. California, that the smart phones many of us carry contain private health care data.

Uses

The mined data has countless applications. The CHF says the information can be used to improve clinical trials, manage diseases, forecast and track epidemics, track data for research purposes, and develop individualized health goals. Going forward, the data can be used to develop personalized medicine that could predict individual health care outcomes. However, the potential usefulness of the data is not without its costs. Although some consumers are willing to give up PHI for the health care benefits, not all individuals are ready to, and even fewer understand the extent to which they are divulging information.

Privacy

The Health Insurance Portability and Accountability Act (HIPAA) (P.L. 104-191) protects private health data. However, HIPAA protections are limited to data held by HIPAA-covered entities. Thus, when data is mined from web-based applications, social networking services, or Internet searches, a consumer cannot be certain that the data is being held by a HIPAA-covered entity. In other words, for much of the data that consumers send out into the expanses of the Internet, current privacy laws are ill equipped to provide any protection.

Where it Goes

The data that consumers unknowingly give up is sometimes sold to third parties. Often times, the data on its face is not health related; however, when pieced together, data about location, age, occupation, exercise interests, income, and weight loss can create a comprehensive picture of an individual’s health. The New York Times reported that some health plans are using this sort of data to engage in predictive health care to anticipate patient claims before they happen. Many patients, however, are unaware of the intimate information hospitals and insurers may access to make their predictions.

Solution

The CHF suggests that new regulations and consumer education can serve as a solution. As technology advances, consumers and regulations need to advance alongside it. When consumers are educated they can make intelligent choices about where and when to divulge PHI. Additionally, regulations can be updated to account for the changing health care landscape and further protect patients from unknowingly losing their health care identities to the Internet.

Mobile Health Apps Bridge Doctor-Patient Divide

Among the top-rated iPhone and Android apps, according to healthline.com, are programs that allow users to track the distance they walked or biked for the day, keep a personalized log of prescription drugs and relevant medical information, record recurring symptoms, and even monitor their sleep cycles, so a programmed alarm clock will go off when the users are at their lightest sleep period and ready to be awakened. Recent reports have indicated that these apps are not just being used by consumers, but are also being touted by physicians as tools used in patient treatment. As the “convergence of medical and consumer apps” becomes more apparent, newer, more highly-functioning apps are expected, yet, will those apps overload our collective hard drive and prove to be more hassle than helpful?

Convergence

A techonomy.com article explored the notion of the converging paths of medical and consumer health apps, stating that recent reports have shown that, “in the future, experts see the integration of consumer apps and devices into ‘a comprehensive healthcare and wellness information system,’ that could enable medical professional to help patients manage their health…” Specifically, the piece mentions the use of mobile apps at the cardiac rehabilitation program at the Mayo Clinic of evidence that, as one expert stated, “physicians are embracing the trend.” Additionally, four large app-building projects are underway at the Center for Digital Health Innovation at the University of California, San Francisco that would, if turned into products, be available to consumers to collaborate with physicians on health issues.

Recipe for Disaster?

While some are optimistic about the future of professional- and consumer-based usage of apps, others have raised questions about the future mobile app industry’s propensity for unwieldiness. In particular, an expert opined that the massive amounts and breadth of data that could be collected by these apps could present a regulatory nightmare while another claimed that “too much data could stifle physician productivity.”

On the Horizon

Regardless of the potential issues raised by the merging of mobile apps for consumers and physicians, it appears that innovation is already pointing in that direction, as one analysis finds that health care management apps are following in the footsteps of (and working in conjunction with) wearable fitness tracking devices. The report acknowledges certain apps that are “worth a look” including: Samsung S Health, which allows the consumer to track nutrition, fitness, and wellness; WebMD Healthy Target, which was designed as a tool for diabetics, hypoglycemic individuals, and those struggling with obesity to monitor weight and blood sugar; and Apple Health, which “displays personal biometric data- heart rate, calories consumers and burned, blood sugar and cholesterol – from the fitness apps that actually collect the data and from devices such as JawBone and IBGStar Blood Glucose Meter.”

An article published on the online Business Insider, however, states that while the new innovations in health care apps are popular, they are not necessarily effective. That source refers to a 2013 report issued by the IMS Institute for Healthcare Informatics that found “most consumer-oriented health apps are severely lacking when it comes to functionality or what they actually allow users to do.” Indeed, “…increased usage doesn’t necessarily correlate with quality.” Specifically, the author of this piece points out that while these health care supporting apps are plentiful, their functionality is limited. In turn, the source predicts, the real revolution is not in the convergence of consumer and medical professional usage of health apps but in the merging of wearable trackers that also function, as apps do, to compile and analyze tracked data. “The real killer app probably won’t be an app at all. It will be whatever device successfully combines the limited functionality that so many apps have into an integrated platform that can actually change people’s health and habits in a holistic way.”

This proposition begs the question, will these combined function devices take over the health care app game? If so, will these devices face similar regulatory and data administration and use challenges that health care apps potentially face? Regardless of the direction of this industry, the bridge between patient care by medical professionals, consumerism, and technology has been forged and consideration of its implications must be undertaken in order to cross it.

Harnessing Open Data: Illinois’ Public Health Datapalooza App Challenge

Looking for a mental health clinic?  Curious about the number of teen pregnancies in your county?  Wondering where the measles might strike next?  In Illinois, there’s an app for that.  The Illinois Department of Public Health (IDPH) recently announced the winners of the Illinois Public Health Datapalooza Challenge, which solicited entries for the creation of apps or maps that help make publicly available data readily accessible, or “open.”  The contest was co-sponsored by Health Data Consortium, IDPH, the Department of Commerce and Economic Opportunity, the Robert Wood Johnson Foundation, Socrata, ESRI, 1871, and the Smart Chicago Collaborative.

Winners

Chris Gansen, a software engineer, and Melissa Buenger, a student with a background in public policy and public health, won the contest for creating HealthNear.Me, an app accessible via the internet with a text-only option.  The two utilized the 10 data sets available at www.data.illinois.gov–IDPH Hospital Directory, Community Service Centers, Condom Distribution Sites, Cooling Centers, Licensed Substance Abuse Providers, Mental Health Clinics, Senior Centers, STI Specialty Clinic, Warming Centers and WIC Clinics.  Users simply select one of the categories, type in a street address, and select a distance, e.g. within one mile, and are provided with the address, phone number, and hours of facilities that meet those criteria.  Users who select a text-only option can text their information to a particular number and receive a text with facility information, instead.

In an interview recorded on WBEZ, Buenger expressed hope that, in addition to benefitting individuals, the app could assist an audience of case workers and other professionals and volunteers who help connect clients with facilities that can treat their immediate health care needs.  She’d like to reach out to those organizations to find out whether the app is useful and determine if additional data sets can be added to assist them.  Gansen emphasized that he and Buenger used an open sourced and published code so that other cities with similar data and formats could use it to establish a similar service.  Although the two do not have plans to collaborate on apps in the future, Buenger suggested that apps aiding people in finding health care coverage, such as an app connecting them to ACA health care navigators, could be helpful.

Second place in the competition went to the Illinois Teen Pregnancy and STI Hot Spot Detector Map app, which includes information about the counties where sexually transmitted infections (STIs) and teen pregnancies are most prevalent.  Drawing on data from IDPH STI data by county from 2008-2012, the app provides information about gonorrhea, chlamydia, and early syphilis, as well as information about teen pregnancies based on 2009-2009 data.  It also provides the location of condom distribution sites, STI specialty centers, and pregnancy termination centers.  An award was also given to the creators of Measles Then and Now In Illinois, an app that provides a history of measles outbreaks and a record of recent vaccinations to help predict future outbreaks.

Open Data

The push for open data has increased rapidly in recent years. The federal Health Data Initiative (HDI), housed at HealthData.gov, is HHS’ effort to make its data resources available to the public.  Its mission is to “improve health, healthcare, and the delivery of human services by harnessing the  power of data and fostering a culture of innovative uses of data in public and  private sector institutions, communities, research groups and policy making  arenas.”  In 2010, 30 data sets were available; that number is now closer to 1,000, and includes a broad array of information, including FDA recalls, CDC emergency text messages, uninsured young adults by county, and information as specific as the results of an “Examination of the Accuracy of Coding Hospital-Acquired Pressure Ulcer Stages.”

Health Data Consortium, whose goal is facilitate the release of open data and to  promote innovation, is a collaboration of government, non-profit, and private sector organizations.  It hosts an annual Health Datapalooza™ to bring together practitioners, technologists and policy makers develop new ways to help residents use data to improve their health.  It has been encouraging the states to do the same and helped to sponsor Illinois’ first ever Public Health Datapalooza.  In kicking off event, the Consortium’s CEO Dwayne Spradlin noted that “Illinois and the region are on the leading edge in a number of areas.”

The results are promising.  Hadlin was “impressed with the quality of the submissions.”  According to IDPH Director LaMar Hasbrouck,  “IDPH will continue to find innovative ways to work with health data and further Governor Pat Quinn’s commitment to improving health outcomes and access to health care in Illinois.”

Announcing the New Health Reform KnowlEDGE™ Center from Wolters Kluwer!

HealthBlog_New-Health-Reform-KnowlEDGE-Center

The new Health Reform KnowlEDGE™ Center launched on February 3, 2014, and serves as a single destination site for breaking news, research and tools. Key offerings include:

  • Breaking news service providing authoritative analysis with practical “how-to” perspectives from attorneys and key industry experts. News will be available via the dashboard, email, mobile apps and RSS.
  • Law and regulation tracking tool with date/task notification and calendar functionality.
  • Numerous quick links to Smart Chart answer tools, editorial-driven checklists, in-depth analysis, expert-authored treatises, white papers, primary source documents and more.

This new offering will have customization functionality, making it the ideal solution for health attorneys, benefits attorneys, employment law attorneys, tax attorneys, in-house counsel, human resources and health care professionals. According to Jean O’Grady, Law Librarian and Knowledge Strategist for Dewey B Strategic, ” The ACA is the poster child  of laws which illustrate the limits of Google as an effective legal research tool for  lawyers because they have ethical obligations to avoid malpractice. The other major legal publishers have collected the ACA primary laws, regs and collateral materials but as of today Wolters Kluwer has claimed a significant lead in the ACA practice space with the release of the Health Law KnowlEDGE™ Center.”

To preview this new product, click here for a brief two-minute video. To register for a free product demonstration, click on one of the following dates:

For more details and to request a free trial, contact your Wolters Kluwer Account Representative.