Category Archive: Child of Informatics

OpenSpecimen Tracking


OpenSpecimen (formerly caTissue) is a bio-bank management tool used to collect, manage, process, annotate and distribute bio-specimens and associated data to selected users.  At Johns Hopkins, OpenSpecimen is currently being used in Gastroenterology, Cardiology and Oncology. OpenSpecimen offers a comprehensive feature set, including: Biospecimen collection, inventory, and tracking Ability to track specimen events (thaws, spins, etc.) Customizable support for storage containers (i.e. freezers, shelves, racks, boxes, position) User-definable forms for patient, collection event, and specimen annotations Flexible specimen ordering and distribution workflows Graphical custom report builder Integrated bulk loading capabilities for existing data Support for multiple biorepositories and locations Mailing … Continue reading

Protection of Patient Data


Johns Hopkins has multiple IT policies regarding the protection of patient data. Diana Gumas, Senior Director for Clinical Research Information Technology, is responsible for working with the Johns Hopkins Medicine Data Trust, the Institutional Review Boards, and the clinical research community to facilitate compliance with policies and address and resolve special data protection needs. The goals of our data protection policies are to ensure compliance with all applicable federal, state, and local law; to safeguard and protect all IT Resources from anything other than authorized and intended use; and to provide protection to academic, clinical, financial, research, and all other … Continue reading

REDCap


REDCap is a mature, secure web application for building and managing online surveys and databases. Using REDCap’s stream-lined process for rapidly developing projects, you may create and design projects using the online method from your web browser using the Online Designer and/or the offline method by constructing a ‘data dictionary’ template file in Microsoft Excel, which can be later uploaded into REDCap. Both surveys and databases (or a mixture of the two) can be built using these methods. REDCap provides automated export procedures for seamless data downloads to Excel and common statistical packages (SPSS, SAS, Stata, R), as well as … Continue reading

Qualtrics Survey


What is Qualtrics? Qualtrics is the world’s leading enterprise survey company, used by 1,300 colleges and universities worldwide, including every major university in the United States. Qualtrics makes it easy to create and distribute engaging surveys. Qualtrics is free for use by all School of Medicine faculty, students and staff for research, evaluations, event registration and more. Surveys can be created and distributed by anyone with a current university login. In order to protect sensitive data, please use Qualtrics instead of Survey Monkey for your surveys. Beyond regular surveys, Qualtrics provides a rich set of features, including the ability to support: Sharing survey design … Continue reading

Secure Surveys


SAFE Desktop


SAFE, the Secure Analytic Framework Environment (formerly called the Secure Data Desktop/SDD) is a virtual desktop that provides Johns Hopkins Medicine investigators (whether engaged in research or other data-intensive activities) with a secure environment to analyze and share sensitive data (e.g. PHI, PII) with colleagues. Top Features Software: the SAFE is installed with productivity software such as Microsoft Word and Excel, as well as statistical software, including SAS, Stata, R, R Studio, and Python. Other software applications can be installed for investigators willing to cover the licensing fees. Data sharing across study teams: the SAFE can be mapped to a … Continue reading

Center for Clinical Data Analysis (CCDA)


The Center for Clinical Data Analysis (CCDA) assists researchers with accessing clinical data for research purposes. The CCDA is staffed with experienced data analysts who will assist you with access to data while also helping you comply with Data Trust privacy and security regulations. Here is how it works:      

What Services Are Provided?

  1. Preliminary, anonymous data for feasibility, grant applications and statistical population sample-size estimates
  2. IRB-approved case-finding for study enrollment (mailings, phone solicitation), chart review, and cohort/case-control studies
  3. Natural Language Processing service (coming soon)
  4. Research data extracts
  5. Honest Broker services
  6. Assistance using Epic’s SlicerDicer self-service tool

Why is There a Charge?

We have built an infrastructure that enables data through a secure, repeatable process that meets your needs, the institution’s values, and applicable privacy and security laws and policies. We looked at how comparable research institutions met this demand, and determined to pursue this approach. Similar to the 20+ other service centers at JHU such as the Genetic Core, the Biological Repository, and the Training and Management Development programs, we have developed a no-profit, revenue neutral approach that aims to provide high quality, lowest possible cost service to the research community. This hourly cost includes analysts, database administrators, servers, software, and management.

Rates:

  • First two hours of guidance and feasibility – No Charge
  • Analysis and data extract services for IRB-approved research – $84/hour ($100/hr for senior staff)
  • Analysis and data extract services for quality improvement – $114/hr
  • Ongoing maintenance of established periodic extracts – factored into initial cost

Who Are Our Customers?

Our customers can include researchers’ IRB-approved research studies, including, but not limited to researchers from the School of Medicine, School of Public Health, and the School of Nursing.

 

Represents requests completed 7/1/2016-6/30/2017

 

 

 

What Data Sources Are Available?

Our team is comprised of trained data analysts with access to multiple data sources including Epic, CaseMix/Data Mart, EPR2020 (Electronic Patient Record), Clinical Research Management System (CRMS), and Sunrise Clinical Manager (POE).

What Data Do We Provide?

Frequently requested data elements include:

  • Demographic data (age, gender, race, ethnicity, contact information)
  • Encounters/Visits (dates/times, locations/clinics, visit providers)
  • Diagnoses (problem list, recorded at the encounter, billed)
  • Lab Results
  • Medications (ordered, administered, patient-reported)
  • Procedures (surgical, imaging, etc.)
  • Flowsheet variables (vitals, etc.)
  • Questionnaires (Depression screening, surveys)

What Data Is Available in Epic?

Data availability in Epic depends on many factors, including clinic/location, specific data elements, and Epic go live at each location. See the graphic below for a timeline of available data.

How Do I Get Started?

To get started you can submit a request to our team using the iLab portal (https://johnshopkins.corefacilities.org/service_center/3796?tab=requests). The CCDA manager will contact you within two business days to schedule a brief intake meeting to discuss your specific requirements.

What Information Is Considered When Structuring a Request?

In order to prepare for your initial intake meeting, it is often helpful to consider the following components regarding the specific data elements of interest: who, what, when, where, and how often. Please see the graphic below for more information about how to turn your high concept into an actionable request!

 

How Can the CCDA Assist Me in Ensuring Compliance with IRB and Data Trust Best Practices?

As part of our Honest Broker responsibilities, the CCDA will only deliver data extracts to secure locations approved by the IRB and Data Trust. We recommend requesting a SAFE Virtual Desktop when specifying the location for PHI storage and analysis. The SAFE is a Windows 10 desktop installed with statistical software including R Studio, SAS, Stata, MS Office productivity suite (Excel, Word, Access), and Python. By using this virtual desktop, you can ensure that the data we provide will be secure.

For more information on data trust and the SAFE Desktop, please refer to the following other informational pages.

Data Trust Overview

SAFE Virtual Desktop

How Long Does a Project Usually Take?

As you can see in the graph below, a majority of the projects that the CCDA handles are small-medium sized, with a majority of time being spent on medium-large projects. The CCDA is happy to work with you no matter how complex your project is.

 

Represents requests completed 7/1/2016-6/30/2017

 

 

 

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Epic Star Data Warehouse


The Star Data Warehouse is an analytical healthcare database that brings together Epic and non-Epic data, such as patient satisfaction information, in one simplified reporting database to vastly improve query ease and efficiency of data extraction for a key subset of data in Epic. To learn more about the Star Data Warehouse implementation at Johns Hopkins Medicine, please visit the the JHM SDW website. Please note, this is an internal website, visible only on the Hopkins network. Benefits Epic and non-Epic data in one place. Information from outside of Epic next to Epic data can be used to create reports … Continue reading

Epic for Clinical Research


Epic is the unified electronic medical record and primary clinical care system for Johns Hopkins.  Epic deployment for all of Johns Hopkins Medicine was completed in July 2016.  It is currently deployed at Johns Hopkins Hospital, Johns Hopkins Bayview Medical Center,  Johns Hopkins Community Physicians, Sibley Memorial Hospital, Howard County General and Suburban Hospital. Epic is integrated with CRMS (Clinical Research Management System). Guiding principle:  For the safety of our patients, clinical research data relevant to patient care should be in Epic and viewable by the care team just like other clinical data. Research data which are study sensitive and not critical for … Continue reading

Clinical Research Management System (CRMS)


CRMS is a web-based tool designed to organize and streamline clinical research management. It is designed to improve communication among study team members, store subject enrollment information in a secure location, and run real-time reports. Accessible by JHED ID, CRMS supports electronic eligibility checklists, integrates with eIRB, and tracks signed consent forms. It is designed to improve communication among study team members, store subject enrollment information in a secure location, and run real-time reports. If you are already a CRMS user, you can access the software at http://research-prod.jhmi.edu/.