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Suggested Citation:"Appendix C: Participant Biographies." National Academies of Sciences, Engineering, and Medicine. 2016. Assessing the Impact of Applications of Digital Health Records on Alzheimer's Disease Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21827.
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C
Participant Biographies

Daniel Burch, M.D., M.B.A., is global therapeutic area head and vice president for Neuroscience at Pharmaceutical Product Development (PPDi). Dr. Burch holds an M.D. from Vanderbilt University and an M.B.A. from the Wharton School, University of Pennsylvania. He completed a residency in Internal Medicine at Vanderbilt University School of Medicine and a Fellowship in Infectious Diseases at Washington University School of Medicine. Dr. Burch has worked in the pharmaceutical/biotech industry for a total of 20 years at Abbott Laboratories, SmithKline Beecham, GlaxoSmithKline (GSK), and CeNeRx BioPharma. His most recent posts were senior vice president, Neurosciences Medicines Development Centre at GSK and executive vice president of research and development and chief medical officer of CeNeRx BioPharma. He was appointed to his current position in 2012.

Julie Bynum, M.D., M.P.H., is associate professor of medicine at the Geisel School of Medicine at Dartmouth and the Dartmouth Institute for Health Policy and Clinical Practice, where she is also the co-director of the Data Analytic Core. Dr. Bynum’s work is focused on assessment of health system performance for the elderly using national U.S. Medicare administrative data. Dr. Bynum has foundation and National Institutes of Health (NIH) funding to study quality and efficiency of health care delivery to high-risk elderly, particularly those with multiple chronic conditions or cognitive impairment. Dr. Bynum has received funding from the American Geriatric Society Foundation for Health in Aging Program for Research on Health Outcomes and has been a Robert Wood Johnson Physician Faculty Scholar. She was a National Institute on Aging Beeson Scholar (K23), studying quality and efficiency of health care delivery to

Suggested Citation:"Appendix C: Participant Biographies." National Academies of Sciences, Engineering, and Medicine. 2016. Assessing the Impact of Applications of Digital Health Records on Alzheimer's Disease Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21827.
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high-risk elderly. One of Dr. Bynum’s contributions to the field has been to develop a method of creating “virtual” physician–hospital networks that allow the measurement of care delivered and its outcomes for a population served by a specific group of providers. These networks were used in the conceptual development of the accountable care organization legislation. She has continued her policy-relevant efforts as a 2011–2013 Health & Aging Policy Fellow funded by the Atlantic Philanthropies and was a member of the Institute of Medicine committee that created the report Vital Signs: Core Metrics for Health and Health Care Progress. Currently she leads three NIH-funded studies: Efficiency of Care for High-Cost, High-Need Beneficiaries; Optimizing Fracture Care Outcomes: A Comparative Effectiveness Approach; and a study that links the Nurses’ Health Study to Medicare claims titled Relationship of Cognitive Decline with Healthcare Costs and Hospitalization Risk. She also leads a Hartford Foundation–funded study of primary care, hospitalization, and costs in older adults with multiple chronic conditions.

Iya Khalil, Ph.D., is a technology entrepreneur and physicist with a vision of transforming medicine into a discipline that is quantitative, predictive, and patient-centric via big data analytic approaches. She co-founded two big data companies, Via Science and GNS Healthcare, and is the co-inventor of the proprietary computational engine that underpins both entities. She trained in theoretical physics at Cornell University, and has more than 11 years of experience in big data analytics for health care, medicine, and the life sciences. She has led several key foundational collaborations with providers, pharmaceutical companies, foundations, and government agencies. Dr. Khalil’s expertise spans applications in drug discovery, drug development, and all the way to treatment algorithms that can be applied at the point of care. She is a frequent speaker at industry events and conferences, has appeared in several industry journals, has published several articles in the field, and was recognized by President Obama at a White House dinner as a leading entrepreneur in genomic medicine. More recently, she was named to the PharmaVOICE 100 list of the most inspiring people in the life sciences industry. She was recognized for her ability to build bridges across the life science and health care industries, bringing people together to harness the power of predictive modeling to change the lives of patients.

Simon Lovestone, Ph.D., MRC Psych, is professor of translational neuroscience at Oxford University and also lead for the National Institute for

Suggested Citation:"Appendix C: Participant Biographies." National Academies of Sciences, Engineering, and Medicine. 2016. Assessing the Impact of Applications of Digital Health Records on Alzheimer's Disease Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21827.
×

Health Research Translational Research Collaboration in Dementia (a network of six Biomedical Research Units and Centres in England focused on dementia), lead for informatics in the Dementias Platform U.K., and co-coordinator of the European Medical Information Framework. He has research interests in the regulation of tau phosphorylation, dementia therapeutics, and in the search for genetic and other biomarkers of Alzheimer’s disease. Underpinning all these studies is the use of informatics—clinical informatics, bioinformatics, and the challenges of extracting value from very large variable datasets.

Tia Powell, M.D., founded and directs the bioethics master’s program and directs the Center for Bioethics at Montefiore Health System and Albert Einstein College of Medicine, where she is professor of clinical epidemiology and clinical psychiatry. Her bioethics expertise is in the domains of public policy; dementia; decision-making capacity; lesbian, gay, bisexual, transgender issues; mediation and consultation; and public health disasters. She served 4 years as executive director of the New York State Task Force on Life and the Law, the state’s bioethics commission. She has served the Institute of Medicine (IOM) on multiple workgroups and was a co-author of IOM’s recent report Cognitive Aging. Dr. Powell was a 2013–2014 Health and Aging Policy Fellow; based on her work during that fellowship, she continues as a senior advisor for the U.S. Department of Health and Human Services to assess and develop federal health initiatives related to dementia and ethics. She is a board-certified psychiatrist and fellow of the New York Academy of Medicine, the American Psychiatric Association, and the Hastings Center.

Walter A. Rocca, M.D., M.P.H., is professor of epidemiology and neurology and the Ralph S. and Beverley E. Caulkins Professor of Neurodegenerative Diseases Research at the Mayo Clinic. He is also the director of the Rochester Epidemiology Project medical records-linkage system and co-director of the Mayo Clinic Specialized Center of Research on Sex Differences. Finally, he chairs the Clinical Research Subcommittee and is a member of the Science Committee of the American Academy of Neurology. Dr. Rocca previously worked for the National Institute of Neurological Disorders and Stroke (NINDS); for the Italian Research Council; and for other European institutions. Dr. Rocca’s research focuses on brain aging and on the etiology of common neurodegenerative diseases, such as parkinsonism and dementia. The fundamental idea is that these diseases are heterogeneous at the population level, multi-

Suggested Citation:"Appendix C: Participant Biographies." National Academies of Sciences, Engineering, and Medicine. 2016. Assessing the Impact of Applications of Digital Health Records on Alzheimer's Disease Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21827.
×

factorial at the individual level, and dimorphic (vary in men and women). These diseases are the result of complex genetic, environmental, social, and cultural risk and protective factors interacting in different phases of life (intrauterine, perinatal, early development, childhood, adolescence, adult life, and late life). He has recently focused his work on the effects of surgical menopause and estrogen on brain aging in women. He is also contributing to the emerging fields of dimorphic neurology and dimorphic medicine (impact of sex and gender on health and diseases). Dr. Rocca received his M.D. from the University of Padua, Italy; his Diploma of Specialty in Neurology from the University of Verona, Italy; and his M.P.H. from the Johns Hopkins University School of Hygiene and Public Health. He completed postdoctoral fellowships at Johns Hopkins University and at NINDS. Dr. Rocca served on several expert panels for the National Institutes of Health and for other institutions nationally (National Academies of Sciences, Engineering, and Medicine; Centers for Disease Control and Prevention; U.S. Department of Veterans Affairs; and U.S. Department of Defense) and internationally (national research agencies of Canada, France, Italy, Saudi Arabia, Spain, and the United Kingdom).

Suggested Citation:"Appendix C: Participant Biographies." National Academies of Sciences, Engineering, and Medicine. 2016. Assessing the Impact of Applications of Digital Health Records on Alzheimer's Disease Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21827.
×
Page 31
Suggested Citation:"Appendix C: Participant Biographies." National Academies of Sciences, Engineering, and Medicine. 2016. Assessing the Impact of Applications of Digital Health Records on Alzheimer's Disease Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21827.
×
Page 32
Suggested Citation:"Appendix C: Participant Biographies." National Academies of Sciences, Engineering, and Medicine. 2016. Assessing the Impact of Applications of Digital Health Records on Alzheimer's Disease Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21827.
×
Page 33
Suggested Citation:"Appendix C: Participant Biographies." National Academies of Sciences, Engineering, and Medicine. 2016. Assessing the Impact of Applications of Digital Health Records on Alzheimer's Disease Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21827.
×
Page 34
Assessing the Impact of Applications of Digital Health Records on Alzheimer's Disease Research: Workshop Summary Get This Book
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Health information technology is providing patients, clinicians, and researchers with access to data that will enable novel approaches to science and medicine. Digital health records (DHRs) are capable of being shared across different health care settings for the examination of possible trends and long-term changes in a patient's disease progression or status as well as the effectiveness of the health care delivery system. While prevalence of paper records remains high, there has been a rapid trend toward the digitalization of medical and health records in many countries.

DHRs are widely viewed as essential for improving health, reducing medical errors, and lowering costs. However, given that these databases have the potential to house the complete medical and health information of individuals, the potential misuse, de-identification or breaching of this data may have serious implications.

On July 20, 2015, the Institute of Medicine's Forum on Neuroscience and Nervous System Disorders held a public session at the 2015 Alzheimer's Association International Conference to assess the impact of DHRs on Alzheimer's disease (AD) research. An estimated 46.8 million people worldwide are currently living with dementia, and the prevalence is expected to double every year for the next 20 years. Given the few therapies currently available to treat the symptoms of AD, compared to other central nervous system disorders, participants explored how DHRs may be used to help improve clinical trial design and methodology for AD research. This report summarizes the presentations and discussions from this workshop.

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