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Assessing the Impact of Applications of Digital Health Records on Alzheimer's Disease Research: Workshop Summary (2016)

Chapter: Appendix B: Workshop Agenda

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Suggested Citation:"Appendix B: Workshop Agenda." 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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B
Workshop Agenda

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

Presented at the Alzheimer’s Association
International Conference on Alzheimer’s Disease
Washington, DC | July 20, 2015

   
8:00 a.m. Session Overview
 
DANIEL BURCH
Vice President, Global Therapeutic Head for Neuroscience
Pharmaceutical Product Development
8:05 a.m.  
Clinical Trial Design: Digital Health Record (DHR) Collaborative Efforts in Europe
 
  • Examine how electronic medical records (EMRs), research, and epidemiology cohorts have been used in the United Kingdom and Europe to identify biomarkers, recruit study participants, and model future clinical trials.
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Suggested Citation:"Appendix B: Workshop Agenda." 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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  • Discuss the European Medical Information Framework progress toward an integrated platform for data aggregation.
 
SIMON LOVESTONE
Professor of Translational Neuroscience
Oxford University
 
8:20 a.m. Infrastructure Needs
 
Half a Century of Medical Records Linkage in the Rochester Epidemiology Project
 
  • Explore how passive record-linkage systems can be combined with active contacts to strengthen research to discover risk and protective factors for Alzheimer’s disease.
  • Review lessons learned, limits and gaps of EMR linkage systems, and how these can be used as practical tools.
 
WALTER A. ROCCA
Director, Rochester Epidemiology Project Professor of Epidemiology and Neurology
College of Medicine, Mayo Clinic
 
Lessons Learned from Medicare Claims–Based Methods of Studying DHRs
 
  • Review the current state of research and diagnostic methodologies based on administrative data and DHRs.
  • Examine reverse translations and limitations of DHRs and identify other necessary data sources.
 
JULIE BYNUM
Associate Professor of Medicine
Dartmouth Institute for Health Policy & Clinical Practice
Geisel School of Medicine at Dartmouth College
Page 29 Cite
Suggested Citation:"Appendix B: Workshop Agenda." 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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8:45 a.m. Ethical, Societal, and Legal Considerations
 
  • Examine what kinds of ethical, societal, and legal issues must be considered in applying DHRs on Alzheimer’s disease research.
 
TIA POWELL
Director, Montefiore Einstein Center for Bioethics
Professor of Clinical Epidemiology and Clinical Psychiatry
Albert Einstein College of Medicine
 
9:00 a.m. Opportunities for Alzheimer’s Disease Research: Facilitated Panel Discussion
 
  • Identify a set of core principles that can be used to support innovative clinical trial design as well as infrastructure and cloud computing needs for Alzheimer’s disease.
  • Discuss how information contained within DHRs holds the potential to identify novel surrogate markers and modify clinical trial design.
  • Identify the data-sharing and management strategies and infrastructure necessary to identify potential surrogate outcomes.
  • Discuss next steps and strategies for moving forward.
 
SIMON LOVESTONE
Professor of Translational Neuroscience
Oxford University
 
WALTER A. ROCCA
Director, Rochester Epidemiology Project
Professor of Epidemiology and Neurology
College of Medicine, Mayo Clinic
Page 30 Cite
Suggested Citation:"Appendix B: Workshop Agenda." 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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JULIE BYNUM
Associate Professor of Medicine
Dartmouth Institute for Health Policy & Clinical Practice
Geisel School of Medicine at Dartmouth College
 
IYA KHALIL
Executive Vice President and Co-Founder
GNS Healthcare
 
TIA POWELL
Director, Montefiore Einstein Center for Bioethics
Professor of Clinical Epidemiology and Clinical Psychiatry
Albert Einstein College of Medicine
 
9:30 a.m. ADJOURN
Page 27 Cite
Suggested Citation:"Appendix B: Workshop Agenda." 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:"Appendix B: Workshop Agenda." 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:"Appendix B: Workshop Agenda." 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:"Appendix B: Workshop Agenda." 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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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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