Showing 4 ideas for tag "data"

Goal 2: Reduce Human Disease

Moonshot: Turning the BMT EMR into a Research Record

The critical challenge is to develop a standards-based BMT electronic medical record (EMR) and integrate research capacity into the architecture of EMR systems. The ultimate goal would be to build de-identified complete data-sets which can be used to support observational studies and clinical trials, improve transplant outcomes and inform public policy.

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Critical Challenge (CC)

Details on the impact of addressing this CQ or CC

Clinical research is constrained by a clumsy method of acquiring biomedical data, generally relying on manual capture of information from EMR back-to-paper which is then transcribed into registry or specific clinical trial databases. This method is labor intensive, fraught with opportunities for error, and increasingly difficult to defend in light of the high costs associated with clinical trials. Adoption of standards-based clinical documentation and creating access to source clinical data would reduce or do-away with resource-intensive, very expensive and time-consuming data abstraction, enhance data quality and depth, and accelerate translational research.

Feasibility and challenges of addressing this CQ or CC

As BMT centers increasingly adopt EMR systems in the United States, a vast and potentially very useful data resource is being created. However, most EMR systems offer very generic formats for clinical documentation and the medical information is inconsistently expressed in vocabulary, structure, and format. One challenge is the development of common standards-based clinical documentation format and its adoption by EMR system vendors and BMT institutions to support structured data sharing.

Large transplant centers can build their own integration engines to link EMR with stem cell lab, HLA, donor care, workflow etc. However, a broad implementation of integration IT solutions would be needed amongst centers conducting BMT clinical trials.

While CIBMTR's FormsNet application and Clinical Trials Network allow electronic data submission, data professionals still need to manually enter the data. Another challenge in creating a centralized data resource would be to build interoperability between transplant centers and research entities. An alternative to a large centralized database could be a distributed research network which allows data holders to maintain logical and physical control over their data and mitigate security, proprietary, legal, and privacy concerns.

Name of idea submitter and other team members who worked on this idea Rakesh Goyal

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57 net votes
71 up votes
14 down votes
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Goal 2: Reduce Human Disease

Data integration in congenital heart disease research

Lack of data integration in the congenital heart disease research community is inhibiting low cost, research opportunities.

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Critical Challenge (CC)

Details on the impact of addressing this CQ or CC

Improve our ability to leverage big data. We could accumulate larger sample sizes to ask/answer important epidemiology or comparative effectiveness questions in the congenital heart disease population.

Feasibility and challenges of addressing this CQ or CC

Bioinformatics, data science, and information technology capabilities are reaching a point to support such large scale data integration efforts.

Name of idea submitter and other team members who worked on this idea NHLBI Staff

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13 net votes
19 up votes
6 down votes
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Goal 2: Reduce Human Disease

Data from regulatory studies a barrier to evidence-based medicine

Alignment of regulatory, healthcare, and research arms of the government is poor. There is a need to improve the design, quality and usefulness of data from regulatory studies to address major clinical questions and also to facilitate scientific inquiry. This is a barrier to evidence based medicine and improved treatments.

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Critical Challenge (CC)

Name of idea submitter and other team members who worked on this idea Society for Vascular Surgery

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2 net votes
3 up votes
1 down votes
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Goal 2: Reduce Human Disease

Harnessing the Tsunami of Patient-Generated Health Data

How can the NHLBI foster the development of effective tools and methodologies to harness the tsunami of patient-generated health data into a valuable resource for conducting patient-centered research? Some challenges to overcome might include a) how to enable the collaboration of the more traditional clinical scientists with scientists from other disciplines such as informatics or computational and data-enabled science... more »

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? Compelling Question (CQ)

Details on the impact of addressing this CQ or CC

Methodological research results in this area could be translated into clinical settings – specifically, they could help physicians interpret such data without being overwhelmed by their sheer volume, and even further use them as helpful adjunct tools to more traditional ways of diagnosing and/or treating diseases.

Feasibility and challenges of addressing this CQ or CC

The increasing number of smartphones, mobile apps, and remote monitoring devices are producing a vast amount of patient-generated health-related data. However, there are no widely established tools, methodologies, or strategies to ensure optimal use and management of these data. The time is right to move forward quickly in furthering research in this field over the next 5 to 10 years.

Name of idea submitter and other team members who worked on this idea NHLBI Staff

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-1 net votes
10 up votes
11 down votes
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