Overview

The Tufts CTSI Informatics Program procures quality data for researchers and provides data analysis services. To support clinical and translational research, we maintain the Tufts Research Data Warehouse (TRDW), a unified repository of Tufts Medicine clinical data including data from Epic and historical Tufts Medicine data sources.

To explore active research projects ongoing in the area of clinical data and informatics, please visit the Center for Advanced Healthcare Research and Informatics, which is located within the Institute for Clinical Research and Health Policy Studies (ICRHPS) at Tufts Medicine.

Resources and Services

Proposal Development & Study Feasibility Services (Pre-Award)

The following Informatics services to aid in grant preparation and study feasibility assessment are offered, on a limited basis, at no cost to faculty researchers at eligible Tufts Medicine institutions:

  • Consultations include:
    • The discussion about the full range of informatics resources to support research projects.
    • Limited assistance writing or editing the informatics components of research protocols.
  • Cohort discovery includes:
    • An overview of data available in the TRDW; Medical Record Numbers (MRNs) for patients in a cohort can be provided with the appropriate IRB approvals.
    • Exploration of research variables with cohort-level summary count.
    • Conversion of cohort description into an executable form, with relevant vocabulary concepts (e.g. ICD, CPT, SNOMED, LOINC, etc.).
    • Guidance regarding reuse of previously validated concept sets, operationalized study variables, and cohort definitions.
    • Cost estimates for cohort refinement and study variable operationalization.

Eligible researchers may access one block of up to three hours of free services per project to support development of a research study that will be submitted for grant funding.

Grant Performance & Study Support (Post-Award)

The following Informatics services are offered on a fee-for-service basis to researchers at eligible Tufts Medicine institutions with IRB approvals as required:

  • Cohort discovery and variable category elaboration – includes everything as in pre-award plus the extensive queries and exploration of data not currently in the TRDW.
  • Recruitment support – contact information for eligible participants for targeted recruitment.
  • Chart abstraction – includes:
    • Patient-level standard reports – simple summary reports and links to historical patient charts not available within Epic.
    • Study variable operationalization – services to locate, correlate, and summarize clinical records into variables supporting defined research needs.
  • Custom development – for example, customization of Natural Language Processing (NLP) specifically to your research project, linkage to external datasets and research registries, image and wave form data collection and processing, and geospatial data linkage and visualization.
  • Data export – de-identified, limited, and full datasets of clinical records for teams conducting their own study variable operationalization.

Following initial service request intake, the Informatics team will provide a quote including the scope of work, a time estimate, and costs for all study support services.

Primary TRDW Sources

The TRDW includes:

  • Tufts Medicine EHR data prior to April 1, 2022
  • Tufts Medicine (Tufts Medicine, MelroseWakefield Healthcare, Lowell General Hospital) EHR data entered after April 1, 2022
  • Tufts Medicine EHR data from the Tufts Medicine Integrated Network associated outpatient private practices, excluding financial data

NOTE: Data requests that span April 1, 2022 may require querying multiple data sources due to a change in the EHR on that date.  This may require additional effort to normalize and merge data sets.

Eligibility

Researchers at Tufts Medicine hospitals are eligible for Informatics data services.

Student, Resident, and Fellow projects are not eligible for free services, except for those engaged in faculty-led research programs, which may receive free consultations if the Principal Investigator (PI) is a faculty member at an eligible Tufts Medicine institution and the faculty member participates in the consultation.

Students, Residents, and Fellows may access Tufts CTSI fee-based services provided a faculty collaborator at a Tufts Medicine hospital is an investigator on the project.

To Initiate a Consultation

To request support or use of our resources, please submit a service request.

Tips for an efficient start to your data project:  For the fast and successful support to your project we need the following information and documentation provided upon project request submission:

Documentation: Whether this project is a funding application that is seeking funding, or an already funded study, please provide the following:

  • Deadlines, internal and external that must be adhered to.
    • Tufts CTSI Informatics team can decline services if there is not sufficient time and resources available to deliver quality results.
  • Protocol, proposal or Form 7, including the data analysis plan.
  • Clearly laid out inclusion / exclusion criteria for the cohort, including standard codes.
  • Clearly laid out the data output needs, definition, units, and any dependencies.

Approvals:

If you plan on collecting data for the purpose of human subjects’ research, your project must be reviewed and approved by your IRB:

  • Please follow IRB guidelines and forms and obtain necessary approvals or waivers.
  • IRB approvals are not required to obtain aggregated cohort counts for assessing feasibility of a study.
  • IRB approvals are required for any requests involving receipt of data, e.g., contact information, de-identified or limited dataset. Please have the approvals available when requesting services. Please see the Health Insurance Portability and Accountability Act (HIPAA) definition of de-identified data at the Tufts IRB website.
  • If you are a Tufts Medicine investigator and plan to share data outside of Tufts Medicine, please contact Research Administration for guidance. A Data Use Agreement (DUA), will be required to share data with non-Tufts Medicine collaborators.
  • You must have an established HIPAA-compliant system or have secure access to a HIPAA-compliant system to store extracted data.

Data Delivery and storage:

  • Tufts CTSI will provide you with the link to a notebook to review the data.
  • Tufts CTSI does not provide data storage for any exported datasets. You must have a plan to transfer and store any exported report or data, and ensure the system meets the HIPAA requirements.
  • If you need assistance for storing large datasets we will be glad to refer you to the appropriate resources.

Tufts CTSI Informatics Voucher Program

To support innovative and promising clinical and translational research projects that would benefit from informatics services, but have no or limited research funds, Tufts CTSI is pleased to offer a limited number of informatics service vouchers. More information can be found on the Informatics Voucher Program webpage.

Contact

To request support or use of our resources, please  submit a service request.

Have questions? Please email informatics@tuftsctsi.org and we will be happy to assist you.

Clark Evans, Co-Director, Informatics

William Harvey, MD, MSc, FACR, Co-Director, Informatics

Andrew Williams, PhD, Co-Director, Informatics

Svetlana Rojevsky, MSc, Program Administrative Director, Informatics