Making clinical trials more patient-centered using digital interactive e-consent tools
About this eBook
About the author
Distinguished Fellow, Health Behavior
Education
PhD, Health Psychology, Kings College
MS, Human Genetics, University of Michigan
BA, Genetics and Psychology, St. Olaf College
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Barbara Biesecker brings to RTI 35 years of experience in genetic counseling, clinical care, graduate education and research. Here, within the Center for Newborn Screening, Ethics, and Disability Studies in the Education and Workforce Development division, Dr. Biesecker conducts research in the Early Check newborn screening initiative. She holds a joint appointment in the Center for Communication Science in the Public Health Research division, within the Social Policy, Health, and Economics Research unit. In that capacity, she performs research on communicating uncertainties.
Dr. Biesecker is an expert in social and behavioral outcomes of genomics, perceptions and communication of uncertainties, and related decisional factors. Her major publications address psychological, social and health outcomes of living with a genetic condition or at genetic risk, and the translation of genomics into clinical care. She is a member of five professional associations, has served as a committee or task force member in over a dozen professional organizations, and reviews for 16 peer-reviewed journals.
Dr. Biesecker has been prolific in publishing peer-reviewed papers throughout her career and has presented on genetic counseling and her research findings at numerous national and international conferences.
Public Health Analyst
Education
AS, Liberal Arts, Suffolk County Community College
Rebecca R. Moultrie is a public health research analyst in the Patient and Family Engagement Research Program. In this role, she plans, coordinates, and assists in the execution of health communication research, including participant recruitment, in-depth interviewing and focus group data collection, entry, and management. Ms. Moultrie is also an experienced project manager overseeing multiple complex projects engaging with external stakeholders and committees. Her research has focused on patient-centered communication and informed decision-making practices, tools, and techniques. Her main area of interest includes research with individuals and families in the rare disease community.
Health Communication Scientist
Education
MPH, Health Behavior and Health Education, University of North Carolina at Chapel Hill
BSC, Interpersonal Communication/Journalism, Ohio University, Honors Tutorial College
Doug Rupert has a dual background in communication and public health. Mr. Rupert specializes in researching, designing, and evaluating health communication and social marketing campaigns on a variety of topics, including prescription and over-the-counter (OTC) medications, cancer prevention and survivorship, unintentional injury, environmental health, patient-provider communication, and mobile and online health. He has led the conceptualization, pretesting, and implementation of multiple health messages, materials, and campaigns and he has conducted process and outcome evaluations to assess program impact. Mr. Rupert has extensive experience in mixed-methods research, combining quantitative and qualitative data to explore individuals’ information needs, evaluate campaign effectiveness, and understand how and why individuals make certain health decisions.
Senior Research Public Health Analyst
Education
PhD, Early Childhood and Special Education, University of North Carolina at Chapel Hill
MA, Educational Psychology, University of North Carolina at Chapel Hill
BA, Psychology, Franklin and Marshall College
Melissa Raspa studies early childhood education and development, with a focus on children with intellectual and developmental disabilities and their families. Much of her work has examined the impact of fragile X syndrome on children and families, including the health and social development of individuals with fragile X syndrome and family well-being.
Corollary work has focused more broadly on family outcomes of early intervention and services for young children with special needs. Of particular interest is the overlap between health communication and disability, including developing materials for parents of young children to recognize the early signs of developmental delay and adapting health care materials, such as those related to participating in clinical trials, for individuals with disabilities and their families.
Dr. Raspa began working at RTI in 2005. She currently serves as Principal Investigator and co-Investigator for two ongoing projects on fragile X syndrome, both funded by the Eunice Kennedy Shriver National Institute of Child Health and Development. Dr. Raspa also leads the evaluation of the New-York Mid-Atlantic Consortium for Genetic and Newborn Screening Services and collaborates with partners at the University of North Carolina at Chapel Hill on a technical assistance project that assists states in examining family outcomes of early intervention. She has received RTI’s Highly Published and Career Author Awards, as well as the President’s Award.
Division Vice President, Public Health Research
Education
PhD, Health Policy and Administration, University of North Carolina at Chapel Hill
MSPH, Health Policy/Economics, University of North Carolina at Chapel Hill
BA, Legal Studies/Public Health/Business Management, University of Massachusetts at Amherst.
Lauren McCormack, PhD, MSPH, is Vice President of RTI’s Public Health Research Division and founded its Center for Communication Science. Her research bridges the fields of health communication and health policy, and involves developing, testing, and evaluating interventions to promote public health, patient engagement, and informed decision-making. Dr. McCormack is the Principle Investigator of a 5-year clinical trial examining the comparative effectiveness of two behavioral interventions focused on opioid use and chronic pain management. She is a recognized expert on health literacy, contributing to a commissioned chapter for the National Academies of Science on health literacy measurement. She served as Chair of PCORI’s Clinical Effectiveness and Decision Science (CEDS) Advisory Panel between 2015-2018. Dr. McCormack is also an Adjunct Associate Professor at the University of North Carolina (UNC) Gillings School of Global Public Health.
