Sharon F. Terry, CEO of the Genetic Alliance, has received an award at the 10th annual Precision Medicine World Conference, held in Santa Clara, CA. She was recognized for "initiating the movement to build systems for individuals to access and share health data." Terry was a stay-at-home mom when she noticed some unusual spots on the sides of her daughter’s neck. Her two children were subsequently diagnosed with pseudoxanthoma elasticum (PXE), a rare, incurable and progressive disease. This devastating prognosis led Terry and her husband, Patrick – both non-scientists – on a quest to discover treatments. She went on to become the first-ever patient advocate to be recognized as a co-inventor on a gene patent, and has since served in leadership roles for many major organizations, including the federal All of Us Research Program. Ms. Terry was the featured speaker on a Consortium-sponsored webcast in late January; the topic was "Consumers in the Lead: Transforming Research and Health." Video of that webcast is available here.
This grant provides funds for the Patient-Centered Network of Learning Health Systems (LHSNet) to participate in PCORnet, a unique collaborative designed to link researchers, patient communities, clinicians, and health systems in productive research partnerships that leverage the power of large volumes of health data maintained by the partner networks. LHSNet includes partners across six states and nine academic medical centers, healthcare systems, public health departments and private health plans touching approximately 10 million individual lives, including patients in underserved and rural areas.