Framework addresses ethical, legal and social challenges for data generated by wearables, smartwatches and mobile health apps
With the increasing use of wearables, smartwatches, mobile health applications, and other personalized health technologies by consumers, the massive amounts of data being generated require more transparency on corporate data management and stewardship. To build on existing best practices and create a standardized approach, Vitality released finalized guidelines for personalized health technologies with leading partners.
“Personalized health technologies and data from these innovations demonstrate tremendous potential to improve the health of consumers, though they must be used in ways that address ethical, legal, and social considerations,” said Derek Yach, MBChB, MPH, chief health officer, Vitality. “These global guidelines have been developed after months of public comment and are a step beyond regulations to create greater transparency and to safeguard the trust of users of personalized health technologies.”
In June 2014, Vitality Institute Commissioners recommended the creation of a framework that addressed ethical, legal and social issues with respect to the use of data collected by personalized health technologies. From July to October 2015, Vitality and colleagues called for and hosted a 90-day global public consultation on draft guidelines to identify best practices for the responsible innovation of personalized health technologies and the appropriate stewardship of data from these devices. The finalized recommendations released at HIMSS16 include:
- Build health technologies informed by science
- Scale affordable health technologies
- Guide interpretation of health data
- Protect and secure health data
- Govern the responsible use of health technology and data
“The guidelines promise to be an enormous step forward in using personal technologies to promote health,” said Kevin Patrick, MD, MS, professor at the University of California, San Diego, a director at the Qualcomm Institute and one of the authors of the guidelines. “It is essential that consumer protections are in place and followed to ensure that consumers are confident in how corporations handle their personal health data.”
Working group to implement guidelines
Vitality is collaborating with organizations to explore how best to pilot, implement, and report on the guidelines for personalized health technology. These will ultimately be measured independently using tangible metrics, and results may be shared publicly. Collaborating across the public and private sectors, the working group will seek to shift the dialogue around personalized health technologies to promote transparency and trust for all stakeholders.
The guidelines can be accessed at: http://www.thevitalityinstitute.org/ELSI
Released at HIMSS16
A panel will be held to discuss the guidelines at HIMSS16 (Wed., Mar. 2, 2016 at 7:30 a.m. Pacific, The Venetian Las Vegas, San Polo Room 3405). A Vitality representative and co-author of the Guidelines will be available for interviews.
Vitality will be exhibiting at HIMSS16 in Booth #15205.