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Transparency vs. Privacy: Is Our Healthcare Data Policy Leading Us to a Dystopian Future?



Last year, I read Dave Egger’s The Circle, a dystopian novel about an eager young woman who forfeits her privacy to work at a powerful tech company known as the Circle (and not-so-subtly representing all that is Google, Facebook, Twitter, etc.). The young woman, Mae Holland, willingly participates in the Circle’s efforts to profile its employees’ preferences, habits and health by answering hundreds of survey questions (“How often do you buy new shoes?”) and adorning digital health trackers to monitor her vitals and exercise. The novel extrapolates beyond the current state of technology and information sharing to convey a totalitarian nightmare, harkening comparisons to such literary classics as George Orwell’s 1984 and Aldous Huxley’s Brave New World.

The progression of Mae’s devotion to feeding the Circle’s insatiable appetite for data collection predictably concludes (but I’ll spare you any spoilers) and the terrified reader feels less inclined to Tweet or Facebook or Snapchat for a couple of hours. Given the technological developments and connected health and wellness innovation in the year since The Circle was published, we have eked closer to Egger’s world of healthcare transparency as consumers (cautiously) trade health data privacy for improved care.

I Don’t Care What You’re Wearing, But I Care About What It Knows About You

In June, I wrote about my indifference to which wearable fitness device was the flavor of the week, emphasizing instead our interest in the software platforms that power these devices. Over the past several months, there has been an increased focus on connecting device-level data to our healthcare providers.

Doctor / Patient Communication: Despite the wearables market’s rapid expansion to an estimated $3-$5 billion market size and the nearly 50,000 health apps, doctors have not yet been able to leverage the data that consumer wearables collect. The current generation of consumer-focused fitness wearables does not yet provide doctors with actionable insights, so healthcare providers must instead utilize patient engagement platforms (such as Ginger.io and Wellframe) to establish a bidirectional flow of information, including personalized care protocols, medication adherence recommendations and patient symptom updates.

While these platforms are the first step in digitally collecting data through patient inputs, the largest tech players are seeking to automate and improve doctor / patient connectivity with apps (such as Apple’s HealthKit and Google’s Google Fit) that collect exercise, nutrition and vitals data points from wearable devices. This data collection will facilitate patient monitoring on an everyday basis, not just when patients visit their doctors.

Self-Monitoring: Devices are also being applied to disease management use cases by enabling patient engagement and improving compliance. Because diabetes affects nearly 10% of the US population, the disease has been of particular focus for disease management technology, “with tens of thousands of diabetics [using] the more than 1,000 apps now available to monitor and manage the condition, further fueling both improved health and big-data solutions (via Information Week).” For example, Gmate provides a smart blood glucose monitoring system that measures glucose readings by integrating an app and smart meter connected to the iPhone headphone jack. This technology enables diabetics to more conveniently monitor their glucose levels themselves while collecting data that the patient can share with their healthcare provider.

Patient / Payer Communication: Health insurance providers like Oscar are providing clients with free Misfits and offering financial incentives for meeting activity goals. In addition to monitoring steps, the devices (and subsequently, doctors) will soon be able to track other exercise, nutrition and vitals data points.

As we outlined in our Connected Health & Wellness research memo, corporate wellness management software platforms leverage wearable devices to track employee activity and nutrition. For example, ShapeUp, a provider of clinically-proven, social networking and incentives-based employee wellness programs, integrates with Fitbit and more than 100 other devices / mobile health tools to track employee activity. ShapeUp uses the data to inform well-being assessments, improve employee health and ultimately reduce employer healthcare costs.

As Parmy Olson of Forbes wrote in June, “the next generations of devices… are already preparing to play a bigger role in how individual-and-group health insurance costs are decided” and the model may evolve from health insurance rates priced annually to a more frequently updated rate determined by health data collected from wearables. Olson noted that some insurance companies (e.g., Progressive) are providing tracking devices for cars that monitor driving and offer better rates for safe driving, and “insurers could do the same with health care, especially since a large portion of today’s $2.6 trillion health care bill is driven by behavior; in particular, bad-diet decisions that lead to obesity and diabetes.”

Given the sensitive nature of healthcare data, there has been much debate about how to reconcile the benefits of transparency with the ethical implications related to privacy:

The case for transparency: Healthcare providers will have a much more comprehensive view of patients’ overall health by combining real-time health data collected via wearables, lifestyle data from other apps and electronic medical records.

As Vivek Wadhwa noted in his Wall Street Journal blog post, How Technology Will Eat Medicine, “artificial intelligence-based systems will monitor us on a 24/7 basis. They will warn us when we are about to get sick and advise us on what medications we should take and how we should improve our lifestyle and habits.” Allowing healthcare providers to collect data points will further promote preventative care and the focus on wellness.

The opportunity for technological advancement is boundless: last week, President Obama announced a research initiative that would include collecting genetic data on one million Americans with the goal of developing drugs and treatments personalized to individual patient characteristics. One near-term goal of the precision medicine initiative will be to “significantly expand efforts in cancer genomics to create prevention and treatment successes for more cancers.” Such research and advancements are only made possible by patients’ willingness to share their genetic and health data.

The case for privacy: There are logical privacy concerns associated with utilizing big data in healthcare, including the fear that tracking will become invasive and data will be used in other contexts (e.g., ad targeting, hiring decisions, insurance rates).

This concern has been exacerbated by recent reports that Healthcare.gov has been sharing user data with several tech firms, with over 50 tracking systems installed on Healthcare.gov in early January (although the site has reduced its data sharing since then). While there is no evidence that the information was being misused, Woodrow N. Hartzog, a law professor who studies privacy, stated in the New York Times that “without knowing more about how private companies use the Healthcare.gov data, it’s hard to tell how worried users of the site should be.”

A major risk associated with healthcare data collection and sharing is the use of data in contexts outside preventative care and patient monitoring. Forbes imagines a Big Brother scenario in which “health insurance [begins] to work like car insurance where every health infraction (say a bar bender, Thanksgiving feast or sedentary Sunday of Netflix binge) hurt[s] your health score and rocket[s] your health premiums”.

Further, the Federal Trade Commission’s recent report on privacy issues associated with the Internet of Things included a discussion of consumer privacy concerns related to connected health and wellness devices. The report notes that “privacy risks may flow from the collection of personal information, habits, locations, and physical conditions over time…[C]ompanies might use this data to make credit, insurance, and employment decisions.” In addition to acknowledging the privacy risks, the FTC also proposes an update to HIPAA standards, which currently apply to patient information collected in doctors’ offices or via insurance companies but neglect to protect the same information if collected from consumer apps. Per the report, “Consumers should have transparency and choices over their sensitive health information, regardless of who collects it.”

Verdict: As a baby of the ‘80s and a futurist literature aficionada, I have long considered personal data transparency a foregone conclusion. If everyone’s data is public, does data on an individual level maintain its sensitivity? Should creditors, insurance companies and employers have the right to determine their rates and hiring decisions with full information, including health statistics? I am sure the answers to these questions, like the technology in question, will change over time, but for now I am hopeful about the advancements that can be achieved through the collection, monitoring and interpretation of patient health data.

In fact, like many other millennials, I want to be monitored. Health-conscious millennials are active participants in the Quantified Self movement: we want to track our health and be alerted at the earliest possible moment of any potential health risks. According to Millennial Mindset: The Worried Well, a study by Allidura Consumer and GSW (both part of inVentiv Health) and Harris Poll, “millennials’ mindset about health is very much an ever-present personal journey of wellness fueled by food, exercise and social connections.” Further, according to the Salesforce 2015 State of the Connected Patient report, 71% of millennials would be interested in a doctor/provider giving them a mobile app on their smartphone/tablet to actively manage their well-being for preventative care, review health records, schedule appointments; 63% of millennials would be interested in proactively providing their health data from WiFi/wearable devices to their doctor/provider so they can monitor their well-being; and 57% of millennials would be interested in cutting-edge devices like pills that can monitor their internal vitals when swallowed.

While we are comfortable having our health data regularly monitored, this desire for transparency may be biased by self-selection, as health-conscious millennials are more inclined to quantify themselves than their (potentially) less active, (by definition) less young counterparts. Gamification and other incentives must continue to encourage those who would otherwise prefer privacy to become more transparent with their health information, as this transparency will improve doctors’ ability to provide preventative care, reduce employers’ healthcare costs and ultimately, improve overall population health and reduce disparities within the population.

Egger’s novel sparked concerns about the morality of data collection by instilling fear that patients’ data will be used against them. My hope for healthcare innovation, and the necessary factor for widespread adoption of corporate and insurance wellness initiatives, is an environment that effectively promotes health and wellness so that the benefit of transparency outweighs the desire for privacy.

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