Digital Trust in a Digital World: Personal Health Data

Guest post by Gillian Christie, health innovation analyst, Vitality Institute

Gillian Christie
Gillian Christie

“Everyone I knew was on drugs for depression, drank too much and had severe sleeping problems.” – former Amazon employee

Jess Bezos’s beloved Amazon.com is the latest company facing criticism for its workplace practices. Jodi Kantor and David Streitfeld’s recently published article in the New York Times depicts Amazon as relentlessly pushing the boundaries of white-collar workers to achieve its sky high ambitions. While evidence suggests that a degree of stress can motivate employees to improve productivity in the short- and medium-term, demanding work cultures like Amazon’s contribute to poor physical and mental health among employees in the long-term.

Chronic diseases – diseases of long duration and slow progression like cardiovascular disease, type 2 diabetes and various cancers – now represent the leading cause of death and disability worldwide. These diseases further contribute to poor workforce productivity and threaten economic competitiveness. A majority of these diseases are largely preventable by modifying underlying risk factors, including physical activity and nutrition, minimizing excess alcohol intake, and avoiding tobacco use. Personalized health technologies – wearables, smartwatches, and mobile health applications – have emerged to empower individuals to track and modify their health behaviors, both inside and outside the workplace. These technologies connect a consumer with a device, a central data hub, and at times a healthcare professional and social network.

The proliferation of personalized health technologies has contributed to consumers engaging in healthier behaviors, but concerns have also emerged regarding the data generated by these devices. Is personal health data accurate, reliable and trustworthy? Is it being reused for marketing or advertising purposes? How do we know that data is secure and protected from cybercriminals? Consumers too often remain in the dark on how their data is used, stored, secured, and shared with others – be it their healthcare provider, employer, or unbeknownst third parties.

Consumers are expected to use more devices in coming years, meaning that more information on habits and preferences will become available to businesses. The global consulting firm Accenture contends that organizations focused on building a reputation based on offering superior services while respectfully using data will emerge as dominant market leaders. Accountability will ensure that companies comply with traditional regulation while proactively practicing self-regulation. “Digital trust is the currency of today,” according to Accenture.

To proactively address consumer concerns associated with personalized health technology, Vitality has launched a global public consultation on a draft set of guidelines running from July to October 2015. The six points addressed are:

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Draft Guidelines Released for the Responsible Use of Wearables, Smartwatches and Health Apps

With consumer use of wearables, smart pill bottles, health apps and other forms of personalized health technology rapidly increasing, concerns around data privacy, proper interpretation of health information and data stewardship are also on the rise.  In response, the Vitality Institute, along with Microsoft Corporation, the University of California, San Diego, and other stakeholders, are developing a set of industry guidelines to address the legal, social and ethical concerns associated with the development and use of the technology and the data it generates.  The guidelines build on existing best practices to create a standardized approach.  A draft of the guidelines is being released online today, opening a three month public comment period before the guidelines are finalized.

“I urge anyone with an interest in the future of health technology to review the guidelines and comment.  This includes consumers who use wearables, smartwatches and health apps, along with leaders of the companies that develop, market and distribute these products,” said Derek Yach, executive director of the Vitality Institute and senior vice president of the Vitality Group.  “Personalized health technology has great potential to benefit the health of countless individuals and it is critical that we proactively address these legal, social and ethical challenges so that potential benefit is not hindered.”

The draft responsibility guidelines make six recommendations that call on personalized health technology to:

  1. Protect the privacy of a user’s health data
  2. Clearly define who owns a user’s health data
  3. Make it easy for users to accurately interpret their data
  4. Integrate validated scientific evidence into product design
  5. Incorporate evidence-based approaches to health behavior improvement
  6. Be accessible to marginalized populations

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