Remarkable advancements in our nation's digital infrastructure combined with explosive growth in pervasive wireless connectivity have created the unprecedented potential to improve both our health and the delivery of healthcare. Beyond their universal availability, smartphones and the mobile networks that support them offer an unparalleled platform for health-related data acquisition and communications. The visionary Precision Medicine Initiative Cohort Program (PMI-CP) is possible, in large part, due to the availability of this digital infrastructure. However, to convert the enormous pool of mostly disjointed information available through a million-person longitudinal cohort into meaningful, life-changing medical knowledge requires development of an innovative, member-centric, engaging, and secure digital network that is state-of-art today, and by design, sustainably so over ensuing years and decades. In order to assure that the PMI-CP achieves its goal to transform the existing culture of medical practice and research by empowering patients, researchers and providers to work together as peers requires the collaborative support of many people with diverse expertise but a singular focus on participant-centeredness. The Participant Technologies Center (PTC) is a critical component to making that happen, and to ensure that we are able to successfully meet the needs of the PMI Steering Committee, and most importantly, the PMI participants, we have formed a network or world-class partners that together have the resources, experience and capabilities necessary to expertly address the known and not-yet known challenges of an endeavor as transformational and far-sighted as the PMI-CP. The Technology to Empower Change in Health (TECH) network is led by Scripps Translational Science Institute and Sage Bionetworks, and includes PatientsLikeMe, Qualcomm, Walgreens, Verizon, Lockheed-Martin, and the Blue Cross Blue Shield Association, bringing together unprecedented experience and knowledge around participant engagement, digital security and personal technologies. Although the PTC is designed to optimize the utilization of technologies in the PMI-CP, our unwavering focus will be on the PMI participant and how to maximize the benefit of participation for them personally. We will accomplish this by laying a foundation built upon personalized engagement strategies, an resolute commitment to security and privacy, and assuring the availability of the state-of-the-art technology needed to meet all current and future data and information sharing needs. .
The Technology to Empower Change in Health (TECH) Network's Participant Technologies Center will work closely with the PMI steering committee and the study participants to development an innovative, member-centric, engaging, and secure digital network that is state- of-art today, and by design, sustainably so over ensuing years and decades.
|Kraft, Stephanie A; Doerr, Megan (2018) Engaging populations underrepresented in research through novel approaches to consent. Am J Med Genet C Semin Med Genet 178:75-80|
|Modena, Brian D; Bellahsen, Otmane; Nikzad, Nima et al. (2018) Advanced and Accurate Mobile Health Tracking Devices Record New Cardiac Vital Signs. Hypertension 72:503-510|
|Wen, Cheng K Fred; Schneider, Stefan; Stone, Arthur A et al. (2017) Compliance With Mobile Ecological Momentary Assessment Protocols in Children and Adolescents: A Systematic Review and Meta-Analysis. J Med Internet Res 19:e132|