Clinical Data Drives Insight and Innovation to Transform Our Healthcare System

CRISP makes data available to researchers who are participating in CRISP and who have gone through a rigorous approval process on patients who have not otherwise opted out of CRISP. Some of the world’s leading health research institutions – including Johns Hopkins Medicine, the University of Maryland Medical System, and the MedStar Research Institute – are participants in CRISP. We supported our first patient-consented research study in 2017 and have continued to incrementally expand the program over time. Data can be provided through several methods – from granting access to clinical resources such as the Query Portal and the Encounter Notification Service with patient consent to the creation of catered data sets based on the research needs.

The CRISP Research Subcommittee is responsible for reviewing and approving use cases. They also provide general guidance to CRISP about the appropriate use of clinical data for research. The CRISP Research Subcommittee reports to the CRISP Clinical Advisory Committee and is composed of the following members:

• Dr. Christopher Chute (Chair) – Bloomberg Distinguished Professor of Health Informatics at Johns Hopkins University
• Dr. Daniel Duran – Chief Clinical Officer, LifeBridge Health
• Dr. Michael Horberg – Executive Director, Mid-Atlantic Permanente Research Institute
• Dr. Warren D’Souza – Professor and Division Head, Medical Physics, University of Maryland School of Medicine
• Dr. Neil Weissman – President, MedStar Health Research Institute.

CRISP’s governance approach includes developing overarching use cases to support specific data requests. These use cases are recommended by the Research Subcommittee for approval by the CRISP Clinical Advisory Committee.

The following use cases have been approved by the Clinical Advisory Board for research purposes (sources can be found here):

• Linking and Enhancing Multiple External Data Sets Using CRISP IDs and Geocodes for Research – Approved November 21st, 2017
• Use Case for IRB-Approved, Patient-Consented Research – Approved November 8th, 2016
• Combining CRISP Patient Identifiers and Geocoding Data with HSCRC Case Mix Data for Research – Approved March 8th, 2017

These use cases allow access to CRISP data sources for research by a participating entity that has been reviewed by a participating entity’s Institutional Review Board and involves subjects who have given explicit consent for their CRISP data to be used in research.

Alzheimer’s Study

Approval Date: July 13, 2023

Principal Investigator: Michelle Carolson Ph. D.

Organizational Sponsor: John Hopkins University

Use Case: IRB approved, patient consented

Patient Opt-out Application: Patient Consented

CRISP Data Requested: HSCRC Case Mix and Encounter Notification data

Summary: Initiated in 2006, the Baltimore Experience Corps Trial (BECT) examined whether multi-modal social, cognitive, and physical engagement enhanced cognitive functions in cognitively healthy older adults. The BECT was novel among intervention trials in its appeal to economically disadvantaged adults at elevated risk for Alzheimer’s disease. Results from the trial showed the productive social engagement as volunteers in elementary schools increased lifestyle activity and generative purpose and improved cognition and brain biomarkers for Alzheimer’s disease over two years of exposure (Carlson, 2015; Gruenewald, 2016; Parisi, 2015). The goal is to determine whether increased social, physical and cognitive engagement in Experience Corps, examined in the BECT among participants enrolled from 2006-2009, led to long-term lower risk for Alzheimer’s disease, reductions in healthcare expenditures, maintained functional independence, improved quality of life, less disability, and lower mortality up to approximately 10+ years later. To achieve these goals, the study requested CRISP data to augment fee-for-service Medicare claims data because it is particularly important to capturing healthcare usage among Medicare Advantage recipients. 

Medstar COVID Emergency Department Returns

Approval Date: August 8, 2022

Principal Investigator: Jessical Galarraga

Organizational Sponsor: Medstar

Use Case: Patient Consented, IRB

Patient Opt-out Application: Patient Consented

CRISP Data Requested: HSCRC Case mix and ADT Encounter Data

Summary: The research developed and validated a COVID-19 emergency department (ED) return screening tool that provided ED clinicians a risk assessment to guide admissions and discharges to reduce morbidity and mortality associated with acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection.

Demonstration of Person Driven Outcome Measures (MedStar PDO)

Approval Date: June 26th, 2020

Principal Investigator: George Hennawi

Organizational Sponsor: Medstar Health Research Insitute

Use Case: Combining CRISP Patient Identifiers and Geocoding Data with HSCRC Case Mix Data for Research

CRISP Data Requested: HSCRC Case Mix Data (Pre-Post Report)

Summary: For this study, investigators at MedStar Health Research Institute are collaborating with the National Committee for Quality Assurance (NCQA) to evaluate an intervention focused on improving care to adults with complex conditions in care management. This intervention involves eliciting, documenting, and tracking person-centered goals of care. The study investigators hypothesize that providing goal-based care will result in improved outcomes for patients including reduced utilization of acute care. The Center for Successful Aging (CSA) is one of four study sites and is the only site located in Maryland. This study will compare change over time between the intervention group to a comparison group of patients from the same practice.

DACOR (COVID 19 Analytics)

Approval Date: March 25, 2020

Principal Investigator: Christopher Chute, MD, DrPH

Organizational Sponsor: John Hopkins University on behalf of its School of Medicine

Use Case: Linking and Enhancing Multiple External Data Sets using CRISP Geocodes

Patient Opt-out Application: CRISP opt out policy applies

CRISP Data Requested: Non-PII HSCRC Case Mix and CRISP Encounter Data

Summary: Requested case mix data in a limited data set of patient data on a cohort of patients identified by CRISP as having been tested for SARS-CoV-2, the virus that causes the COVID-19 disease. The primary purpose of including the case mix data in this project is to establish a past medical history of existing co-morbidities that can help understand the risk factors for patients who experience more severe forms of the COVID-19 disease and to help predict disease progression among COVID-19 patients. The case mix data was combined with encounter data from CRISP.

UMD Prescription Drug Monitoring Program

Approval Date: March 18, 2020

Principal Investigator: Marianne Cloeren, Associate Professor

Organizational Sponsor: University of Maryland, Baltimore

Use Case: Administrative Data Only

Patient Opt-out Application: NA – no PHI provided

CRISP Data Requested: Non-PHI Prescriber Data

Summary: The University of Maryland Division of Occupational and Environmental Medicine worked with the Maryland State Department of Health, under a grant from the National Institute for Occupational Safety and Health to evaluate the effectiveness of a brief educational intervention on opioid prescribing attitudes and POMP use behaviors of Maryland medical providers. The study objectives were to measure changes in baseline and post training attitudes about the POMP; baselines self-reported POMP use and post training planned POMP use; differences based on workers’ compensation care experience; effect of the module on clinical decision making in fictional cases; and, changes between baseline and post training POMP use patterns in participants as compared to other Maryland providers. CRISP data was used to measure changes between baseline and post training POMP use patterns in participants as compared to other Maryland providers.