Assessing the Impact of Applications of Digital Health Records on Alzheimer's Disease Research Workshop Summary (2016) / Chapter Skim
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2 Building Infrastructure to Enable Data Sharing and Management
2 Building Infrastructure to Enable Data Sharing and Management
Pages 7-16
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From page 7... ...
. • Medicare claims data offer another rich source of research data on more than 50 million Americans.
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A challenge not exclusive to DHRs, a recommendation in the IOM's 2015 report Sharing Clinical Trial Data: Maximizing Benefits, Minimizing Risk was that "special attention is needed to the development and adoption of common protocol data models and common data elements to ensure meaningful computation across disparate trials and databases. A federated query system of ‘bringing the data to the question' may offer effective ways of achieving the benefits of sharing clinical trial data while mitigating its risks" (IOM, 2015, p.
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The records were collected initially on paper and have been used primarily for research purposes. Between 2000 and 2006, the paper records were progressively replaced with DHRs, a portal was created to enable searching of the records, and the catchment area was expanded beyond Olmsted County to include seven more counties in southeastern Minnesota (Rocca et al., 2012)
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. The a assessme showed th cognitivel normal ind ent hat ly dividuals cou be classifi uld ied accordding to their biomarker profiles into o of five g p one groups: norm mal (Stage 0)
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. These data may also be used in upcoming clinical trials to identify potential trial subjects, obtain baseline and/or run-in data, study long-term outcomes and side effects after the trial phase is complete, and make comparisons to control subjects.
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t proximately 3 30,000 incide ent cases of AD by 202 Baseline data collected on all partic o 27. d d cipants betweeen 2005 and 2008 inc clude Web-based question nnaires regarrding cogniti ive and mental health, lifestyle factors such as occupation, and exposure m es.
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CRIS has used a natural language processing system called General Architecture for Text Engineering7 to parse textual data and extract meaning from a combination of free text and coded data. Most information relevant to the progression of cognitive impairment is collected in the uncoded textual data, said Lovestone.
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The DHR data sources available through the EMIF platform are even larger, with a cumulative total of about 48 million subjects. MEDICARE ADMINISTRATIVE DATA Medicare billing data offer another rich source of data for research, according to Julie Bynum, associate director at the Center for Health Policy Research, Geisel School of Medicine at Dartmouth College.
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Among more than 400,000 patients with more than 1 year of medication use in 2009, more than half had a low income, and more than 40 percent were newly diagnosed. Beyond its use in health services research, Bynum suggested that Medicare claims data could provide population observations to inform clinical and basic science research, what she called "reverse translational research" (see Figure 2-3)
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Image courtesy of Nancy Morden , Geisel Schoo of Medicine at 0, e N ol e Dartmoouth College. used to assess the in o nfluence of inndividual dru or combin ugs nations of dru ugs on disease progresssion or incide ence of adver effects.
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