Personalized health technologies (PHTs) ranging from wearable tracking devices to connected pill bottles have emerged to empower individuals to quantify healthy behaviors. Health information is wirelessly collected by connecting users to a consumer device, a central data hub, others in a social network, and at times a health professional. Data are analyzed to provide users with a view of their health status with recommendations for improvement. PHTs have facilitated the expansion of the Quantified Self and the Internet of Things movements.
Big data from PHTs can be used to encourage healthy behaviors. Large quantities of health data generated by PHTs facilitate near ubiquitous data collection in real-time. Nonetheless, this same data raises ethical, legal, and social challenges. Who is the owner of my health data? Who can access my health information? Does everyone have access to and the ability to benefit from these technologies? Answers to these questions may apply differently to individuals generating the data, companies aggregating and managing the data, and researchers using the data for research.
To address ethical, legal, and social challenges associated with PHTs, the Vitality Institute has developed a draft set of guidelines for companies that design and disseminate PHTs. Today, the Vitality Institute is pleased to launch a public comment period on those guidelines.
These guidelines are intended to be principles for the development of PHTs and the stewardship of their associated data. They include:
- Protect the privacy of a users health data
- Clearly define who owns a users health data
- Make it easy for users to accurately interpret their data
- Integrate validated scientific evidence into product design
- Incorporate evidence-based approaches to health behavior improvement
- Be accessible to marginalized populations
This builds on todays publication of Consultation for Collective Action on Personalized Health Technology: Eliminating Ethical, Legal, and Social Barriers for Individual and Societal Benefi in the Journal of Health Communication.
The global public consultation will be open for three months and will solicit feedback from a variety of stakeholders: academic researchers, business leaders, entrepreneurs, policymakers, consumers which means you! Following the consultation, the finalized guidelines will be released along with organizations that pledge to piloting and implementing them. By providing your input, you have the opportunity to influence the future design of PHTs and the appropriate use of their associated personal health data.
Are you concerned about the collection, sharing, and analysis of your personal health information? Please provide your comment by Tweeting at Gillian Christie @gchristie34 or the Vitality Institute @VitalityInst.