Why security is key to advancing precision medicine goals through the All of Us Research Program

By Lynda Malik-Gagnon, DXC.technology

On May 6, 2018, the U.S. National Institutes of Health (NIH) launched the All of Us Research Program, a unique longitudinal initiative that seeks to inject new data into population health efforts to advance research and health outcomes. The program aims to engage one million or more U.S. participants as partners to gather insights for precision medicine to prevent and treat diseases based on individual differences in lifestyle, environment and genes.

Participants and consortium partners in the program will be asked to contribute a wide range of health, lifestyle and environmental information. The information may be acquired from multiple sources such as electronic medical records, specimen collection, mobile applications, etc., and will flow into a database for researchers studying many different topics in health and disease.

A broad spectrum of organizations is supporting the program in various ways. This includes bio specimen and data collection and storage, healthcare and retail organizations to help with recruitment, and a central communications and support hub important for participants and all members of the consortium, among others. As important as the data is to advancing precision medicine, so too is protecting the privacy of participants. It is therefore vital that all organizations involved in the All of Us Research Program understand their obligations with regard to personally identifiable information (PII), personal health information (PHI) and other data. This is all the more critical given the commitment to having the data be diverse and representative of all U.S. residents, including groups that have been underrepresented in medical research. That means it’s necessary to take into account the various levels of knowledge and health literacy when it comes to privacy. Every organization needs to understand the NIH’s Precision Medicine Initiative’s Privacy and Trust Principles that commit to the protection of participants’ data and resources. Read more …