National Academies Press: OpenBook
« Previous: 3 Ethical, Legal, and Societal Considerations
Suggested Citation:"4 Potential Next Steps." 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.
×

4
Potential Next Steps

Highlights

  • Advances in data analytics offer great potential for researchers to move beyond correlations to mechanisms and cause-and-effect relationships (Khalil).
  • Incorporating patient-reported outcomes, clinical care records, and data from personal devices such as smartphones will further enrich the data available for mining (Lovestone).
  • Patient consent to access and use data remains a thorny issue for citizens, researchers, and legislators (Bynum, Lovestone, Powell, Rocca).
  • Researchers must respect the intentions of the persons from whom the data were derived, but at the same time ensure that data are used as widely as possible for the best possible purposes (Lovestone).

NOTE: These points were made by the individual speakers identified above; they are not intended to reflect a consensus among session participants.

The Century Cures Act, which, among other goals, aims to advance interoperability in health information technology as a pathway to improved biomarkers and therapies for AD and other diseases.

Beyond the potential of exploiting these clinical data, researchers now measure things with greater granularity, marry data across types, and combine these data with computational and machine learning

Suggested Citation:"4 Potential Next Steps." 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.
×

techniques to move beyond correlations to mechanisms and cause/effect relationships, said Iya Khalil, executive vice president and co-founder of GNS Healthcare. For example, computer algorithms combining anthropometric and laboratory measures are now capable of predicting risk of developing metabolic syndrome and model response to various interventions, providing the capability for personalized medicine. Similarly, companies such as GNS Healthcare are working to integrate multiple layers of data from AD patients to develop an algorithm that can predict who is at risk for AD as well as the optimal treatment protocols. These data go beyond simple clinical and laboratory measures to include linkage of genetic and molecular markers and imaging readouts to longitudinal clinical outcomes, providing insight into how things work from the biological level to the health care system level. Big data may also be useful as a means of providing real-world data about areas of unmet need, noted Khalil.

Simon Lovestone added that the ability to incorporate patient-reported outcomes, clinical care records, and measures from personal devices such as smartphones will further enrich the data available for mining. The key, he said, is to enable patients to have some control over their data. Tia Powell noted that much less research is done on low-income and minority groups, so working to build trust among these populations will be especially important.

However, a few participants noted that consent to access and use data from DHRs remains a challenge for citizens, researchers, and legislators alike. For example, Minnesota law requires patients to provide general consent before their medical records can be used for Institutional Review Board–approved research, said Walter Rocca. Regulatory decisions may also be open to reinterpretation over time. Julie Bynum said that an older regulation about access to information on substance abusers and substance abuse was recently reinterpreted to require removal of all substance abuse claims from claims data. The result of that change is that if a researcher tries to examine claims data to assess longitudinal change in risk of substance abuse, claims for a segment of high-risk individuals will be missing, compromising the results of the analysis.

Multinational studies may be especially impacted by regulations limiting the sharing and reuse of data, said Lovestone. As a research community, he said, we have a responsibility to respect the researcher’s intentions for data utilization, but ensure in tandem that data are used as widely as possible for optimal purposes.

Suggested Citation:"4 Potential Next Steps." 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 21
Suggested Citation:"4 Potential Next Steps." 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 22
Next: Appendix A: References »
Assessing the Impact of Applications of Digital Health Records on Alzheimer's Disease Research: Workshop Summary Get This Book
×
Buy Paperback | $45.00 Buy Ebook | $35.99
MyNAP members save 10% online.
Login or Register to save!
Download Free PDF

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.

  1. ×

    Welcome to OpenBook!

    You're looking at OpenBook, NAP.edu's online reading room since 1999. Based on feedback from you, our users, we've made some improvements that make it easier than ever to read thousands of publications on our website.

    Do you want to take a quick tour of the OpenBook's features?

    No Thanks Take a Tour »
  2. ×

    Show this book's table of contents, where you can jump to any chapter by name.

    « Back Next »
  3. ×

    ...or use these buttons to go back to the previous chapter or skip to the next one.

    « Back Next »
  4. ×

    Jump up to the previous page or down to the next one. Also, you can type in a page number and press Enter to go directly to that page in the book.

    « Back Next »
  5. ×

    Switch between the Original Pages, where you can read the report as it appeared in print, and Text Pages for the web version, where you can highlight and search the text.

    « Back Next »
  6. ×

    To search the entire text of this book, type in your search term here and press Enter.

    « Back Next »
  7. ×

    Share a link to this book page on your preferred social network or via email.

    « Back Next »
  8. ×

    View our suggested citation for this chapter.

    « Back Next »
  9. ×

    Ready to take your reading offline? Click here to buy this book in print or download it as a free PDF, if available.

    « Back Next »
Stay Connected!