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Holly L. Peay

Senior Director

Overview

Holly Peay collaborates with clients on matters related to patient-focused drug development (PFDD), patient engagement and patient-focused research. She brings clients a sophisticated ability to generate meaningful, fit-for-purpose patient experience and preference data and systematically integrates the patient voice into the life cycle of drug and device development. She has experience in rigorous patient, community and invested party engagement to inform ethical and acceptable clinical research and product development.

Holly is a respected scientist with experience leading clinical and public health research; decision support; patient experience; and ethical, legal and social impact studies. Her clinical and research areas of focus have included rare and common disorders, genomic sequencing and other genomic and genetic technologies, public health, decision support tools, and empirical bioethics.

Patient-Focused Drug Development

Holly collaborates with patient advocacy organizations, pharmaceutical and medical device companies, government agencies, and professional societies to obtain rigorous qualitative and quantitative data to assess patient experience, determine priorities and inform patient-focused drug development. She is expert at survey and instrument development, data collection and analysis, and qualitative and quantitative interpretation. Data from her studies are used to understand symptom impact, treatment priorities, meaningful and valid outcome measures, acceptable and meaningful benefits, and risk and burden tolerance. She works with clients to use data to generate feasible and acceptable research protocols that are patient-centered, decision aids and shared decision making tools, and education and consent materials. She brings skill in engagement and collaboration across rare and common disorder communities, including transdisciplinary engagement as well as professional and community experience.

Prior Experience

In her decade-long prior role as a senior research scientist at RTI International, Holly developed and led work for industry, research and advocacy groups, as well as the Food and Drug Administration and other government agencies, related to common and rare health disorders, with a focus on genetic disorders, newborn screening, and gene therapy and gene editing. Holly led patient preference and experience studies, clinical research, studies that explored the ethical use of emerging technologies, research to inform the disclosure of research results to participants, and decision support and informed-consent tools. She also conducted community-engaged research in which Holly ensured that diverse perspectives were included in study planning, implementation, reporting, and the development of recommendations and guidance.

Previous to RTI, Holly was senior VP of community research at Parent Project Muscular Dystrophy (PPMD). She has also been an intramural researcher and associate graduate program director at the National Human Genome Research Institute; a senior project director and principal investigator at the National Coalition for Health Professional Education in Genetics (NCHPEG); a genetic counselor at Greater Baltimore Medical Center; and a genetic counselor at Johns Hopkins’ Epidemiology and Genetics Program in the Department of Psychiatry.

Personal Interests

In her free time, Holly enjoys spending time with family and friends, traveling, swimming, running, and reading.

Credentials

Certifications

American Board of Genetic Counseling — Certified Genetic Counselor (CGC),1999-2024

Education

Leiden University
Ph.D. in Medicine (2015)

University of South Carolina School of Medicine
M.S. in Genetic Counseling (1997)

University of Virginia
B.A. in Interdisciplinary Studies in Biomedical Ethics (1995)

Insights & Events

Other Perspectives

Holly has published more than 110 peer-reviewed articles, as well as a book, five book chapters, and numerous reports, blogs and other grey-literature resources. Selected examples follow.

Leadership & Community

Pro Bono

  • National Human Genome Research Institute — Genomics and Society Working Group, 2022-present
  • Frontiers in Genetics — “ELSI in Science and Genetics” Section, Associate Editor, 2021-present
  • The Patient: Patient-Centered Outcomes Research — Editorial Board, 2016-present
  • International Consortium of Newborn Sequencing — Steering Committee, 2023-25
  • National Institutes of Health’s All of Us Research Program — Ethical, Legal and Social Implications (ELSI) Brain Trust Committee, 2022-25

Professional Associations

  • International Society for Pharmacoeconomics and Outcomes Research — Stated-Preference Methods Special Interest Group
  • Society for Medical Decision Making
  • American College of Medical Genetics