Data Enclaves for Sharing Information Derived From Clinical and Administrative Data.

@article{Platt2018DataEF,
  title={Data Enclaves for Sharing Information Derived From Clinical and Administrative Data.},
  author={Richard Platt and Tracy A. Lieu},
  journal={JAMA},
  year={2018},
  volume={320 8},
  pages={
          753-754
        }
}
The promise that big data will transform health care has yet to be fulfilled. Even though essentially all medical care now leaves an electronic trail, data are underused as a way to create knowledge about the safety and effectiveness of medical treatments, the generalizability of care practices, and the effects of medical coverage policies. National leaders have called for greater use of electronic data to generate evidence. For example, the National Institutes of Health’s strategic plan for… 

Figures from this paper

Restoring Faith in HIPAA Privacy Protections while Enabling More Efficient Data Sharing (Preprint)

A comprehensive federal privacy law or standard is warranted alongside this proposed administrative control process for data enclaves to address important privacy loopholes.

Bringing Code to Data: Do Not Forget Governance (Preprint)

How commitments to open science, reproducibility, security, respect for data subjects, and research ethics oversight must be re-evaluated in a model-to-data context is explored.

Detecting Systemic Data Quality Issues in Electronic Health Records

This manuscript contributes methodology for data quality assessment by plotting domain-level (conditions, drugs, and procedures) aggregate statistics and concept-level temporal frequencies (i.e., annual prevalence rates of clinical concepts) and finds patterns suggest data quality issues influenced by systemwide factors that affect individual concept frequencies.

MIMIC in the OMOP Common Data Model

The objective was to evaluate the difficulty to transform MIMIC into an OMOP (MIMIC-OMOP) database and the benefits of this transformation for analysts and the result is the first MIMic-OMop dataset available free of charge with real disidentified data ready for replicable care research.

Treatment Patterns for Chronic Comorbid Conditions in Patients With Cancer Using a Large-Scale Observational Data Network

Wide variations exist in the treatment of common comorbidities in patients with cancer, similar to the general population, and demonstrate the feasibility of conducting research on patients withcancer across a large-scale observational data network using a common data model.

Transformation and Evaluation of the MIMIC Database in the OMOP Common Data Model: Development and Usability Study

The model proved its ability to support community contributions and was well received during the datathon, with 160 participants and 15,000 requests executed with a maximum duration of 1 minute.

Design, Implementation, and Evolution of the Medicaid Outcomes Distributed Research Network (MODRN)

The Medicaid Outcomes Distributed Research Network (MODRN) developed a research network of states to conduct rapid multi-state analyses without sharing individual-level data across states, creating a new, scalable, successful model for conducting policy research while complying with federal and state regulations.

Transforming Dementia Care Through Pragmatic Clinical Trials Embedded in Learning Healthcare Systems

There is an urgent need for researchers to partner with care settings, especially those that follow a learning healthcare systems (LHSs) model, to conduct embedded pragmatic clinical trials (ePCTs), and the work of the Health Care Systems Core within the National Institute on Aging's IMbedded Alzheimer's Disease and Related Dementias Clinical Trials Collaboratory that will occur over the next 5 years is described.

Challenges in IBD Research: Pragmatic Clinical Research.

Pragmatic clinical research is part of five focus areas of the Challenges in IBD research document, which also includes preclinical human IBD mechanisms, environmental triggers, novel technologies, and precision medicine, and is focused on highlighting gaps that need to be addressed in order to optimize and standardize IBD care.

BIOMARKERS FOR TRAUMATIC BRAIN INJURY: DATA STANDARDS AND STATISTICAL CONSIDERATIONS.

This review discusses data management concepts, and statistical and data sharing strategies when dealing with biomarker data in the context of TBI research, and examines the statistical techniques required to realize successful adoption and use of biomarkers in the clinic as a foundation for precision medicine in TBI.

References

SHOWING 1-5 OF 5 REFERENCES

Intussusception risk after rotavirus vaccination in U.S. infants.

RV5 was associated with approximately 1.5 (95% CI, 0.2 to 3.2) excess cases of intussusception per 100,000 recipients of the first dose of RV5, and the secondary analysis suggested a potential risk, although the study of RV1 was underpowered.

State and Local Chronic Disease Surveillance Using Electronic Health Record Systems

Chronic disease surveillance using electronic health record data is feasible and generates estimates comparable with Behavioral Risk Factor Surveillance System state and small-area estimates.

Scholars have data on millions of Facebook users: who’s guarding it? https://www .nytimes.com/2018/05/06/technology/facebook -information-data-sets-academics.html

  • Accessed May
  • 2018

Health data as a core utility for the common good. https://nam.edu/wp-content /uploads/2017/10/2-McGinnis-Working _Core-Utility-Slides_14sep17.pdf

  • Accessed June
  • 2018