Ethan Basch, MD
University of North Carolina School of Medicine, Lineberger Comprehensive Cancer Center
Ethan is a federally appointed member of the Methodology Committee of the Patient-Centered Outcomes Research Institute (PCORI), a member of the Board of Directors of the International Society for Quality of Life Research (ISOQOL), Co-Chair of the Health Outcomes Committee of the Alliance for Clinical Trials in Oncology, and a member of the Board of Scientific Advisors of the National Cancer Institute.
Patricia Brennan, RN, PhD
University of Wisconsin-Madison School of Nursing and College of Engineering
Patricia's research focuses on designing and evaluating home care community computer systems for use by patients. Her work ranges from the development and evaluation of computer networks as a mechanism for delivering nursing care to homebound ill persons and their caregivers to assessing the impact of patient-centered computer technology on the health outcomes of persons following coronary artery bypass graft surgery.
Dr. Helen Burstin, MD, MPH, FACP
Chief Scientific Officer, National Quality Forum
Dr. Burstin’s work is focused on advancing the science of quality measurement and improvement. Her varied career includes positions as the Director of the Center for Primary Care, Prevention, and Clinical Partnerships at the Agency for Healthcare Research and Quality (AHRQ), as Assistant Professor at Harvard Medical School, and as the Director of Quality Measurement at Brigham and Women’s Hospital. She chairs the Quality Measures Workgroup of the federal Health IT Policy Committee and is the author of more than 80 articles and book chapters on quality, safety and disparities.
David Cella, PhD
Northwestern University Feinberg School of Medicine, Department of Medical Social Sciences
David has received several grants and contracts to study quality of life measurement in clinical trials, cross-cultural equivalence of quality of life measurement, efficacy of psychosocial interventions in oncology, and medical outcomes research. He is Principal Investigator of the Statistical Coordinating Center for the NIH Roadmap Initiative to build a Patient Reported Outcome Measurement Information System (PROMIS). He is also Principal Investigator of a contract to develop item banks for the clinical trials supported by the National Institute of Neurological Disorders and Stroke. David has over 500 publications in the area of quality of life measurement in clinical trials and clinical practice.
Head of Patient Reported Outcomes, Novartis
A leader in formulating and implementing patient-reported outcomes strategies in clinical trials, Ari has worked with pharmaceutical leader Novartis for nearly 30 years. His most recent initiatives have focused on creating a center of excellence within Novartis to successfully integrate Patient Reported Outcome modules in clinical trials using a five step approach. Ari’s specialties include patient-reported outcomes, multinational clinical trials, questionnaire design, biostatistics, health outcomes research, and e-data capture of PRO data. He is currently exploring ways to optimally communicate PRO findings from clinical trials.
Co-Founder, Solution Therapeutics and Parent Advocate, The Addi and Cassi Fund
Hugh’s identical twins, Addison and Cassidy Hempel, are afflicted with "Childhood Alzheimer's," a rare genetic disorder. The foundation his family started in 2007 aims to find therapies for this tragic disease and to re-purpose existing compounds, if possible. Hugh brings a key caregiver perspective as well as a background as Silicon Valley marketer. He is an advisory board member of Sparkpr and the co-founder and past COO of Hopelink, an early dot.com company that created an online directory of clinical research to identify, match, and recruit potential participants in Clinical Trials.
Erin Holve, PhD
Senior Director, AcademyHealth
Erin heads AcademyHealth's work on analytic methods and research resources for the field of health services research. In this capacity she works with AcademyHealth's Methods Council and the HSR Consortium, and manages AcademyHealth's online learning activities. Erin also leads several projects related to patient-centered outcomes research and comparative effectiveness research, including serving as principal investigator of an AHRQ-funded grant, the Electronic Data Methods (EDM) Forum. She is also principal investigator of the HSRProj program, which is supported by the National Library of Medicine.
Eugene Nelson, DSc, MPH
Professor, Dartmouth School of Medicine
Director, Population Health Measurement Program, The Dartmouth Institute
Dr. Nelson is a leader in healthcare improvement, population health and the development and application of measures of quality, health outcomes, value, and patient perceptions. He is the recipient of The Joint Commission’s Ernest A. Codman award for his work on outcomes measurement in health care. Dr. Nelson has authored over 150 publications and published three recent books: (a) Quality by Design: A Clinical Microsystems Approach, (b) Practice-Based Learning and Improvement: A Clinical Improvement Action Guide: Second Edition, and (c) Value by Design: Developing Clinical Microsystems to Achieve Organizational Excellence.
Bryce Reeve, PhD
University of North Carolina Gillings School of Global Public Health
Bryce directs a program dedicated to improving quality of care for cancer patients and promoting the use of patient-reported outcomes (PROs) in clinical research and practice. He has organized international and domestic conferences devoted to PRO application. Bryce is also President of the International Society for Quality of Life Research (ISOQOL) and is a member of the ISOQOL Steering Committee for multiple groups.
PhD student, Karolinska Institutet
A doctoral student in the field of Medical Management, Sara’s research project seeks to facilitate individual improvements in health outcomes in chronic disease by describing and evaluating a methodology for improving the basis for communication. She is creating a novel system for capturing personal observations in Parkinson’s patients. The system will give Parkinson’s patients a tool enabling them to use their personal observations as a means of contributing more actively to self-care, healthcare and research. Calling herself “not patient but im-patient,” Sara is also co-founder of the Parkinson’s Movement, headquartered in London.
President and CEO, Genetic Alliance
Sharon is President and CEO of Genetic Alliance, a network of more than 10,000 organizations, of which 1,200 are disease advocacy organizations. Genetic Alliance enables individuals, families and communities to reclaim their health and become full participants in translational research and services. Sharon is also the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). As co-discoverer of the gene associated with PXE, Sharon holds the patent for ABCC6 to act as its steward and has assigned her rights to the foundation.
Ken Wallston. PhD, MA
Professor of Psychology in the School of Nursing, Vanderbilt University
A founding member of the Society of Behavioral Medicine and the Division of Health Psychology of the American Psychological Association, Dr. Wallston has been developing and validating patient-reported measures of health beliefs, behaviors, and outcomes since the 1970s. He has been the principal investigator or co-investigator on over 30 research grants studying individuals with a variety of chronic medical conditions. As a person coping with a number of chronic conditions himself, Dr. Wallston brings both a patient and a researcher perspective to the group.
Chief Commons Officer at Sage Bionetworks; Founder, Consent to Research
Senior Fellow in Entrepreneurship, Ewing Marion Kauffman Foundation
John is the Chief Commons Officer at Sage Bionetworks and a Senior Fellow at the Ewing Marion Kauffman Foundation. He is also the founder of Consent to Research, which is devoted to building free legal and technical systems that make personal genomic data available under open access terms. He is also a past Vice President of Science at Creative Commons, which provides free tools that let authors, scientists, artists, and educators easily mark their creative work with the freedoms they want it to carry.