Research Data Collection and Storage (RDCS) Service
Posted by: Crystal Williams on: August 28, 2018
The Research Data Collection and Storage (RDCS) service assists researchers with secure solutions for data collection outside of Epic. The most commonly provided service is REDCap. Information about REDCap can be found here: https://ictr.johnshopkins.edu/programs_resources/programs-resources/informatics/redcap/ RDCS can also assist investigators with other services including: Setting up and maintaining secure SQL Server databases which comply with Data Trust guidelines for clinical research registries. Migration of existing MS Access or Excel databases to more secure solutions. Secure non-REDCap questionnaire solutions, such as Qualtrics. Advice on database construction, design, and remote access. Specialized interfaces to collect data from research instruments For more … Continue reading
Center of Excellence Analytics in Medicine Program (CAMP)
Posted by: Crystal Williams on: June 4, 2018
The Center of Excellence (COE) Analytics in Medicine Program (CAMP) trains participants in the Johns Hopkins Precision Medicine Analytics Platform (PMAP) and is hosted by the Institute for Clinical and Translational Research (ICTR), Technology Innovation Center, inHealth Initiative, and Division of Health Sciences Informatics (DHSI). The Center of Excellence Analytics in Medicine Program is a Johns Hopkins initiative to accelerate biomedical research by combing EMR, medical imaging, physiological monitoring, and genomics onto a cloud-based big data platform. In this 12-week preparatory course, participants will learn how to significantly improve their data collection methods and leverage machine learning algorithms in order to … Continue reading
Program to Accelerate Clinical Research Using EPIC (PACE)
Posted by: Crystal Williams on: April 20, 2018
PACE was established to help clinical researchers take full advantage of tools within the EPIC Electronic Health Record system for their research projects. We design and build customized EPIC content for your project to enhance the efficiency and standardization of the data collection process and improve data quality. Potential applications of customized EPIC build are numerous, some typical scenarios include: Tools that help providers to collect discrete data on a population of interest (such as longitudinal studies). This may include documentation flowsheets and SmartForms as well SmartSets that help populate Epic data fields in a standardized way. It may also … Continue reading
Data Management Advisory Board
Posted by: Crystal Williams on: July 26, 2017
The ICTR Data Management Advisory Board is designed to focus on data management within clinical research studies, including ways in which data management impacts study efficiency and the value of the data for both primary and secondary uses. Within Johns Hopkins there are a wide range of approaches to data management, with most of the responsibility centered within the individual studies. There are a few centers of expertise related to database management that have not generally met with each other or collaborated with each other to create institutional approaches and standards. The Data Management Advisory Board will work to answer … Continue reading
Posted by: Crystal Williams on: August 4, 2016
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
Posted by: Roxanne Stambaugh on: December 21, 2015
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
Posted by: Crystal Williams on: November 10, 2015
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
Posted by: Crystal Williams on: February 24, 2015
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
Posted by: Roxanne Stambaugh on: July 11, 2014
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
Core for Clinical Research Data Acquisition (CCDA)
Posted by: Roxanne Stambaugh on: July 11, 2014
The Core for Clinical Research Data Acquisition (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:
- Preliminary, anonymous data for feasibility, grant applications and statistical population sample-size estimates
- IRB-approved case-finding for study enrollment (mailings, phone solicitation), chart review, and cohort/case-control studies
- Natural Language Processing service–Text mining and information extraction methods to identify disease, medications, symptoms, and signs from clinical text, as well as artificial intelligence techniques for sentiment analysis, opinion mining, measuring cognitive ability, and exploring social determinants of health.
- Research data extracts
- Data de-identification services to confirm to HIPAA Privacy standards (link should be over HIPAA and be https://www.hhs.gov/hipaa/for-professionals/privacy/special-topics/de-identification/index.html
- Honest Broker services
- Assistance using Epic’s SlicerDicer self-service tool
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.
- 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
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.
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).
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)
To get started you can submit a request to our team using the iLab portal (https://johnshopkins.corefacilities.org/service_center/3796?tab=requests). Please click the login button on the top-right of the window; then, select “JHU user”. The CCDA manager will contact you within two business days to schedule a brief intake meeting to discuss your specific requirements.
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!
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.
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.
Epic Star Data Warehouse
Posted by: Roxanne Stambaugh on: July 11, 2014
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