Guest post by Gillian Christie, health innovation analyst, Vitality.
An era of self-quantification of health behaviors using technology is emerging outside of the doctor’s office. Consumer-facing health technologies empower individuals to monitor their health in real-time, employers to understand the health of their workforce, and researchers to uncover health trends across geographies. Eventually, the data from these technologies will re-enter the hospital setting by linking to our electronic medical records.
Deluges of data are rapidly being generated by these technologies. An estimated 90 percent of the world’s data has been created in the past two years. IBM’s CEO, Ginni Rometty, indicates that data is the “next natural resource.” But how are these data protected and secured?
In the United States, laws have historically protected consumers from the misuse or abuse of their medical information. The Health Insurance Portability and Accountability Act (HIPAA) and the Health Information Technology for Economic and Clinical Health Act (HITECH) have protected medical data from inappropriate uses. Data generated by consumer-facing health technologies, however, are not covered by these Acts. Companies can use the data for their own purposes. This means that companies must be ever more vigilant in ensuring the trust of their consumers through their data practices.
How can we collaborate across sectors to maintain and enhance trust? As a start, Vitality, Microsoft and the Qualcomm Institute at the University of California, San Diego, published an open-access, peer-reviewed commentary that outlined ethical, legal and social concerns associated with emerging health technologies. The call to action was for guidelines to be developed through a consultative process on the responsible innovation of these technologies and the appropriate stewardship of data from the devices. Between July and October 2015, we hosted a global public consultation to identify best practices. On Mar. 2, 2016, at HIMSS, we released the finalized guidelines for personalized health technology. They include five recommendations:
“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: