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Assessing the Impact of Applications of Digital Health Records on Alzheimer's Disease Research - Workshop Summary (Paperback)
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Assessing the Impact of Applications of Digital Health Records on Alzheimer's Disease Research - Workshop Summary (Paperback)
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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. Table of Contents Front Matter 1 Introduction and
Overview 2 Building Infrastructure to Enable Data Sharing and
Management 3 Ethical, Legal, and Societal Considerations 4
Potential Next Steps Appendix A: References Appendix B: Workshop
Agenda Appendix C: Participant Biographies
General
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