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Suggested Citation:"Front Matter." 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.
×

ASSESSING THE IMPACT
OF APPLICATIONS OF
DIGITAL HEALTH RECORDS
ON ALZHEIMER’S
DISEASE RESEARCH

WORKSHOP SUMMARY

Lisa Bain and Sheena Posey Norris, Rapporteurs

Forum on Neuroscience and
Nervous System Disorders

Board on Health Sciences Policy

Institute of Medicine

images

THE NATIONAL ACADEMIES PRESS

Washington, DC

www.nap.edu

Suggested Citation:"Front Matter." 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.
×

THE NATIONAL ACADEMIES PRESS • 500 Fifth Street, NW • Washington, DC 20001

This activity was supported by the Alzheimer’s Association; Brain Canada Foundation; Contract No. HHSN26300026 [Under Master Base # DHHS-10001292] with the Department of Health and Human Services’ Food and Drug Administration and National Institutes of Health through the National Center for Complementary and Integrative Health, National Eye Institute, National Institute of Mental Health, National Institute of Neurological Disorders and Stroke, National Institute on Aging, National Institute on Alcohol Abuse and Alcoholism, National Institute on Drug Abuse, and NIH Blueprint for Neuroscience Research; Contract No. VA240-14-C-0057 with the Department of Veterans Affairs; Eli Lilly and Company; Foundation for the National Institutes of Health; the Gatsby Charitable Foundation; GlaxoSmithKline, Inc.; Johnson & Johnson Pharmaceutical Research and Development, LLC; Lundbeck Research USA; Merck Research Laboratories; The Michael J. Fox Foundation for Parkinson’s Research; the National Multiple Sclerosis Society; Contract No. BCS-1064270 with the National Science Foundation; One Mind for Research; Orion Bionetworks; Pfizer, Inc.; Pharmaceutical Product Development, LLC; Sanofi; the Society for Neuroscience; Takeda Pharmaceutical Company Limited; and the Wellcome Trust. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.

International Standard Book Number-13: 978-0-309-37972-4
International Standard Book Number-10: 0-309-37972-5
DOI: 10.17226/21827

Additional copies of this report are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu.

Copyright 2016 by the National Academy of Sciences. All rights reserved.

Printed in the United States of America

Suggested citation: 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.

Suggested Citation:"Front Matter." 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.
×

images

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Ralph J. Cicerone is president.

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The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president.

The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine.

Learn more about the National Academies of Sciences, Engineering, and Medicine at www.national-academies.org.

Suggested Citation:"Front Matter." 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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Suggested Citation:"Front Matter." 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.
×

PLANNING COMMITTEE ON ASSESSING THE IMPACT
OF APPLICATIONS OF DIGITAL HEALTH RECORDS ON
ALZHEIMER’S DISEASE RESEARCH1

DANIEL BURCH (Chair), Pharmaceutical Product Development, LLC

TIA POWELL, Albert Einstein College of Medicine

IOM Staff

CLARE STROUD, Project Director

SHEENA M. POSEY NORRIS, Associate Program Officer

ANNALYN WELP, Senior Program Assistant

ANDREW M. POPE, Director, Board on Health Sciences Policy

______________

1Institute of Medicine planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution.

Suggested Citation:"Front Matter." 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.
×

This page intentionally left blank.

Suggested Citation:"Front Matter." 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.
×

FORUM ON NEUROSCIENCE AND NERVOUS
SYSTEM DISORDERS1

STEVEN HYMAN (Chair), The Broad Institute of Massachusetts Institute of Technology and Harvard University

STORY LANDIS (Vice Chair), Former Director, National Institute of Neurological Disorders and Stroke

SALVATORE ALESCI, Takeda Pharmaceuticals International, Inc. (until November 2015)

SUSAN AMARA, Society for Neuroscience

RITA BALICE-GORDON, Pfizer Global Research and Development (since September 2015)

KATJA BROSE, Cell Press

DANIEL BURCH, Pharmaceutical Product Development, LLC

SARAH CADDICK, Gatsby Charitable Foundation

ROSA CANET-AVILES, Foundation for the National Institutes of Health

MARIA CARRILLO, Alzheimer’s Association

C. THOMAS CASKEY, Baylor College of Medicine

KAREN CHANDROSS, Sanofi US

TIMOTHY COETZEE, National Multiple Sclerosis Society

FAY LOMAX COOK, National Science Foundation

BRUCE CUTHBERT, National Institute of Mental Health (since November 2015)

WILLIAM DUNN, Food and Drug Administration

EMMELINE EDWARDS, National Center for Complementary and Integrative Health

MARTHA FARAH, University of Pennsylvania

DANIEL GESCHWIND, University of California, Los Angeles

HANK GREELY, Stanford University

MAGALI HAAS, Cohen Veterans Bioscience

RAMONA HICKS, One Mind for Research

RICHARD HODES, National Institute on Aging

STUART HOFFMAN, U.S. Department of Veterans Affairs

THOMAS INSEL, National Institute of Mental Health (until October 2015)

______________

1Institute of Medicine forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published workshop summary rests with the workshop rapporteurs and the institution.

Page viii Cite
Suggested Citation:"Front Matter." 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.
×

PHILIP IREDALE, Pfizer Inc. (until August 2015)

MICHAEL IRIZARRY, Eli Lilly and Company

JOHN ISAAC, Wellcome Trust

INEZ JABALPURWALA, Brain Canada Foundation

FRANCES JENSEN, University of Pennsylvania School of Medicine

GEORGE KOOB, National Institute on Alcohol Abuse and Alcoholism

WALTER KOROSHETZ, National Institute of Neurological Disorders and Stroke

ALAN LESHNER, American Association for the Advancement of Science (Emeritus)

HUSSEINI MANJI, Johnson & Johnson Pharmaceutical Research and Development, LLC

DAVID MICHELSON, Merck Research Laboratories

JAMES OLDS, National Science Foundation

ATUL PANDE, Tal Medical

STEVEN PAUL, Voyager Therapeutics

EMILIANGELO RATTI, Takeda Pharmaceuticals International, Inc. (since December 2015)

TODD SHERER, The Michael J. Fox Foundation for Parkinson’s Research

DAVID SHURTLEFF, National Center for Complementary and Integrative Health

PAUL SIEVING, National Eye Institute

NORA VOLKOW, National Institute on Drug Abuse

STEVIN ZORN, Lundbeck Research USA

IOM Staff

CLARE STROUD, Forum Director

SHEENA M. POSEY NORRIS, Associate Program Officer

ANNALYN M. WELP, Senior Program Assistant

ANDREW M. POPE, Director, Board on Health Sciences Policy

Suggested Citation:"Front Matter." 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.
×

Reviewers

This workshop summary has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published workshop summary as sound as possible and to ensure that the workshop summary meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the process. We wish to thank the following individuals for their review of this workshop summary:

IYA KHALIL, GNS Healthcare

SIMON LOVESTONE, University of Oxford

MATS SUNDGREN, AstraZeneca R&D

GEORGE VRADENBURG, USAgainstAlzheimer’s

Although the reviewers listed above have provided many constructive comments and suggestions, they did not see the final draft of the workshop summary before its release. The review of this workshop summary was overseen by ERIC B. LARSON, Group Health Research Institute. He was responsible for making certain that an independent examination of this workshop summary was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this workshop summary rests entirely with the rapporteurs and the institution.

Suggested Citation:"Front Matter." 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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Suggested Citation:"Front Matter." 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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Suggested Citation:"Front Matter." 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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Suggested Citation:"Front Matter." 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 R2
Suggested Citation:"Front Matter." 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 R3
Suggested Citation:"Front Matter." 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 R4
Suggested Citation:"Front Matter." 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 R5
Suggested Citation:"Front Matter." 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 R6
Suggested Citation:"Front Matter." 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 R7
Page viii Cite
Suggested Citation:"Front Matter." 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 R8
Suggested Citation:"Front Matter." 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 R9
Suggested Citation:"Front Matter." 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 R10
Suggested Citation:"Front Matter." 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 R11
Suggested Citation:"Front Matter." 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 R12
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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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