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:

  1. The privacy of a user’s health data
  2. Defining who owns that data
  3. Guidelines for interpreting that data
  4. Integrating product design with validated scientific evidence
  5. Integrating evidence-based methods to health behavior improvement
  6. Making the technology available to underserved populations

Vitality encourages stakeholders – business leaders, government officials, academic researchers, journalists and everyday users of personalized health technology – to provide their feedback on the guidelines. Following the consultation, the guidelines will be adopted and implemented by Vitality and other relevant partners. Details of the consultation can be accessed at: http://www.thevitalityinstitute.org/ELSI.

Bezos’s letter to shareholders enclosed in the 1997 Annual Report focused on creating value over the long-term. In lieu of Amazon’s current corporate culture, the company’s ability to be “Earth’s most customer-centric company” will likely require adopting a long-term perspective to deliver strong results in a sustainable manner – a culture that aspires to improve the health of its workforce while responsibly using technology and associated data. As technology continues to transform the modern day workplace, companies that prevail will be those that can balance data generation and responsible stewardship while offsetting entrenched notions of Big Brother.


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