CTSA@CHOP Connector Series: Your CHOP Data Journey

CTSA@CHOP Connector Series: Your CHOP Data Journey Transcript

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Lisa Guay-Woodford, MD

Hello, I'm Lisa Guay-Woodford, a principal investigator for the ITMAT CTSA and Site Lead for the CTSA@CHOP.

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One of the main functions of a CTSA program is to facilitate connections between researchers and the valuable resources within and outside of their institutions.

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At CHOP, we're fortunate to have a wealth of powerful data sources available for our investigators and research teams.

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In fact, we have so many great resources, that it can feel daunting to start your data journey.

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You might be asking, "What resources can give me what I need?", "Who manages those resources?", "How do I get started once I've identified the resource that I need to advance my research?".

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In this video, I will provide a simple overview of the data sources available at CHOP and where to get started.

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By the end of this overview, you should feel confident about taking your first steps on a fruitful CHOP data journey.

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Now CHOP has a vast quantity of data available for researchers across a wide variety of modalities that could come from CHOP directly or external sources.

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Depending on the type of data you use, HIPPA and IRB policies may apply.

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We can help guide you through these processes.

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Let's explore a few of the key types, starting with CHOP-based data.

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Examples of clinical data that are collected on CHOP patients include: demographic characteristics and vital signs, medical note data, laboratory data, medical imaging data, monitoring data, biospecimen data, and genetic data.

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Additional data collected at CHOP, includes financial and billing data, Epic Messenger data, staff and patient communications, application access data, and much more.

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These data are available to researchers across the Research Institute, with varying access that we'll discuss in a later episode.

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In addition to these CHOP-based data sets, researchers have access to a wide variety of external data resources that are often housed at CHOP.

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These data sources may include some CHOP data. For example, in the case of a multi-center clinical trial that includes CHOP as a site.

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Other data sources are fully external data that is collected by an outside group but is available for researchers at CHOP.

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Due to the nature of these data sets, many of data are deidentified.

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Examples of external data include administrative data, which is often originally collected for billing purposes. These data may include Medicaid data from various states.

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Merative Marketscan Research Data, the Premier Healthcare Database, data from the Children's Hospital Association's Pediatric Health Information System or PHIS.

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Many of these data sources include large samples that approximate a national representation of pediatric patients.

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In addition, there are also national surveys and registries. For example, the Healthcare Cost and Utilization Project or HCUP databases, include national samples of inpatient stays, emergency department visits, and ambulatory care.

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And finally, there are many data resources available to augment CHOP data. These may come in the form of geospatial data that can be linked to patients via a particular geography such as zip code.

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Publicly available data from the US Census on neighborhood characteristics fall into this category.

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Another example is data on pollution or weather patterns from the National Oceanic and Atmospheric Association, that is also available to be linked based on geography.

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So, as you can see, researchers have many sources of reliable data to choose from for their projects.

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In the next section, we'll discuss how you can learn more about common data sources and gain access to these data sets.

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The Data Gene Catalog is the front door to data at CHOP. Many data resources are cataloged in Gene, and it is continuously updated and enhanced.

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Of note, Arcus data resources are among those cataloged in Gene.

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In Gene, you can discover data available for research purposes and learn about data assets. You can also converse with users and administrators of the data and see prior discussions from other users.

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So now that you have an overview of the various data resources at CHOP, I encourage you to take the next step on your data journey and learn a little bit more about the resource or resources that you hope to utilize.

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Please, don't hesitate to reach out to me and the CTSA@CHOP team if you need support in starting your journey. Thanks for your attention and good luck.