The current US healthcare system faces criticism for escalating costs, stagnant quality, and a largely unrealized benefit from over 27 million dollars spent making the potential of billions of dollars in investment. Recent advances in AI can play a critical role in various medical tasks, such as identifying patients at risk of sepsis, predicting treatment responses based on pharmacogenomic variants, prognosticating patient outcomes, and generating new medical content, in addition to impacting back-office functions like scheduling and prior authorization. These advances are already transforming other industries, but are slow to be adopted in medicine, in part because of the sensitive nature of health care encounters and of their data exhaust. The goal of the Observer project is to create an open resource that provides data and contextual information that will inform research bridging medicine, engineering, and other disciplines focusing on health and healthcare. The presentation will discuss the work underway to build this resource, as well as some potential projects based on what has been seen to date.

Kevin B. Johnson, MD, MS is the David L. Cohen University Professor of Biomedical Informatics, Computer Science, Pediatrics, and Science Communication at the University of Pennsylvania, and Vice President of Applied Clinical Informatics in the University of Pennsylvania Health System. He received his MD from Johns Hopkins and his MS in Medical Informatics from Stanford University.

Dr. Johnson is an internationally respected expert in clinical informatics. His current research focuses on clinical documentation and AI. Johnson was among the world’s first researchers to propose and demonstrate the value of text-messaging in behavior change. Previously, he served as Chair for the Department of Biomedical Informatics and Chief Informatics Officer for Vanderbilt University Medical Center. Johnson holds numerous national leadership positions and serves on various advisory boards.

Johnson is passionate about educating lay audiences about informatics. He has produced documentaries related to health information technology. His podcast, “Informatics in the Round” features experts discussing informatics topics to songwriters. Most recently, he co-published a book series called “Who, Me?” featuring scientists from marginalized groups, encouraging young children to consider careers in STEMM.

He has authored over 200 publications and has won numerous national awards. He was elected to the American College of Medical Informatics in 2004 (FACMI) and (FAMIA), The Academic Pediatric Society in 2010, the National Academy of Medicine in 2010, the International Association of Health Science Informatics in 2021 (FIAHSI), the American Institute of Medical and Biological Engineering in 2022 (FAIMBE).

Welcome to the pointy end of the stick. It is often thought that human engagement in the integration of AI and NLP within biocomputing is too messy to yield desired results. Some biocomputational systems celebrate the use of biomedical data without ever interacting with a human. These exciting technologies offer unprecedented capabilities in scaling data analysis. It is time to recognize that scaling can be applied to even the messy human interactions. These can be organized in ways that elucidate the authority of individuals and communities, while at the same time preserving the power of emerging biocomputational systems. Relying solely on people’s preferences, needs, demands, and perspectives creates a cacophony. Reliance on AI exclusively can lead to self-reinforcing feedback loops, creating biased and unreliable outcomes. The presentation will showcase a model, Community Driven Innovation, that integrates community insights with AI-driven processes, emphasizing the importance of iterative human-AI collaboration to achieve meaningful, relevant, and accurate research outcomes to serve real people. Additionally, the talk will explore ethical concerns such as consent, privacy, and sustainability, advocating for a balanced approach that leverages AI’s strengths while maintaining the indispensable role of human expertise in biocomputing, both in the researchers with domain-expertise as well as the people who live with diseases and health challenges.

Sharon F. Terry is the President and CEO at Genetic Alliance, where her leadership fuels an initiative dedicated to empowering individuals, families, and communities to take charge of their health and spearheading progress in biomedical research. Genetic Alliance delivers impactful programs, products, and tools designed to recognize the power of people in alleviating suffering.

As ‘just a Mom’ with a master’s degree in Theology, she cofounded PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE), in response to the diagnosis of PXE in her two children in 1994. This research advocacy entity champions efforts to find a treatment for PXE. Her remarkable scientific contributions include co-discovering the ABCC6 gene, pioneering a diagnostic test, and leading clinical trials. Sharon is an esteemed author with 150 peer-reviewed publications, including 30 pivotal clinical studies on PXE. Her inspiring journey is described in her TED Talk and TED Radio Hour.

With her gaze fixed on enhancing consumer participation in genetics, Sharon holds influential positions across several preeminent international and national bodies. These include the Precision Medicine Initiative Cohort Advisory Panel, Accelerating Medicines Partnership, National Academy of Medicine's Roundtable on Genomics and Precision Health, NAM Board on Health Sciences Policy chair, and many more. As a founding figure, she's left her mark on organizations like the EspeRare Foundation and the International Rare Disease Research Consortium.

Sharon's advocacy led to the landmark passage of the Genetic Information Nondiscrimination Act. Her accolades include an honorary doctorate from Iona College in 2006, the Research!America Distinguished Organization Advocacy Award in 2011, and the Clinical Research Forum's Leadership in Public Advocacy Award. FDA acknowledged her as one of the "30 Heroes for the Thirtieth Anniversary of the Orphan Drug Act" in 2013. She's also a co-inventor of PEER, backed by a significant grant from the Robert Wood Johnson Foundation.

As a beacon of participatory health, Sharon was honored with the Luminary Award from the Precision Medicine World Conference in 2019 and is celebrated as an Ashoka Fellow since 2009. She received the American Society of Human Genetics Advocacy Award in 2021. Terry is an Ashoka Fellow. She is an avid student and facilitator of Gestalt Awareness Practice, offering workshops and individual facilitation. Her daughter and son are why she started down this path. They, their wives, and her granddaughter ground and enliven her.