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:
- Build health technologies informed by science: Integrate scientific and behavioral evidence into the design of health technologies to better understand health risks and outcomes.
- Scale affordable health technologies: Develop cost effective health technologies that are accessible by all populations to minimize health inequalities.
- Guide interpretation of health data: Facilitate interpretation of health data through software design to support better health literacy.
- Protect and secure health data: Embed privacy and security design features into health technology to ensure end to end protection.
- Govern the responsible use of health technology and data: Disclose practices associated with the governance of health technologies and data to create shared values for all stakeholders.
In short, technologies that improve the public’s health should be informed by science, affordable, safe and protect the user’s health data. Implementation of the guidelines will entail a working group that will define how to measure the guidelines independently using tangible metrics, and encourage results to be shared in corporate reports. Collaborating across sectors, the proposed guidelines seek to shift the dialogue around health technologies to promote shared values for all stakeholders. The guidelines do not attempt to preempt government regulation. Instead, they aim to fill holes where needed in existing regulatory frameworks.
Technological innovation demands a balance between creation and government regulation. The guidelines are an attempt to ensure that benefits to health using technology will be realized over the long-term as opposed to reactively addressing the consequences for years to come.