CRISP Research Initiative

Every week, CRISP receives and sends millions of pieces of data in support of our mission to facilitate care, reduce costs, and improve health outcomes. These data can also provide powerful insights about how we can do better. Some call this creating a Learning Health System. Research is a fundamental part of the learning cycle.

Research represents the newest permitted purpose (effective April 20th, 2016) for data sharing under the CRISP Participation Agreement. The state regulatory framework to support this permitted purpose went into effect on June 20th, 2016. Prescription Drug Monitoring Program (PDMP) data may also be made available in the future for data requests that comply with state regulations (see in particular the section on disclosures for research, analysis, education and public reporting).

How Will CRISP Use Patient Data for Research

CRISP is beginning to make HIE data available to researchers who are participate in CRISP and who have gone through a rigorous approval process. 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. Our first uses will be for studies on people who have enrolled in a research study and have agreed to give researchers access to their data through CRISP. Over time, we may add new uses that involve data from larger groups of people where specific consent is not possible or practical or where all of the personally identifiable information (like name and address) have been removed.

Research Subcommittee

CRISP created a Research Subcommittee that reports to the CRISP Clinical Advisory Board to manage requests for data from researchers.

  • Dr. Christopher Chute (Chair) – Bloomberg Distinguished Professor of Health Informatics at Johns Hopkins University
  • Dr. Michael Horberg – Executive Director of Research and Community Benefit, Mid-Atlantic Permanente Medical Group
  • Ms. Shannah Koss – Patient / Consumer Representative
  • Dr. Robert S. Rudin – Information Scientist, RAND
  • Dr. Kate Tracy – Associate Professor and Director of Clinical Translational Research and Informatics Center at the University of Maryland School of Medicine
  • Dr. Neil Weissman – President of the MedStar Health Research Institute
  • Approved Use Cases

    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 Board. The Research Subcommittee then will review specific data requests coming from signatories of the CRISP Participation Agreement and evaluate their fit for approved use cases. Over time, CRISP will add new use cases that cover additional types of data requests.

    The following use cases have been approved by the Clinical Advisory Board for research purposes:

    Combining CRISP Patient Identifiers and Geocoding Data with HSCRC Case Mix Data for Research – Approved March 8th, 2017

    Use Case for IRB-Approved, Patient-Consented Research – Approved November 8th, 2016

    Linking and Enhancing Multiple External Data Sets Using CRISP IDs and Geocodes for Research – Approved November 21st, 2017

    This use case allows 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.

    Approved Data Requests

    Principal Investigator: Hadi Kharrazi

    Organizational Sponsor: Johns Hopkins University / Johns Hopkins Center for Public Health IT

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

    CRISP Data Requested: HSCRC Case Mix Data enhanced with anonymized CRISP IDs and census block group level geocodes

    Summary: Using the HSCRC case mix data, the investigators are developing and validating spatiotemporal risk prediction trajectory models to predict elder falls. The investigators will examine geographical information system (GIS) data sources for completeness, accuracy and timeliness and develop hot-spotting algorithm using GIS triangulation and predictive modeling. Analysis will utilize Poisson and Bernoulli distribution models to identify hotspots and we will customize methodology using ArcGIS, SaTScan and R software packages. They will develop and evaluate a falls risk score with new and external data to improve current methodology and risk prediction scores. The research involves a large anonymized population health dataset. Sample size varies from each year depending on the number of Baltimore residents who receive care at a hospital. The average number of inpatient hospital visits for Baltimore in 2013 has been about 103,000 and outpatient visits have been over 1.3 million. The team will validate the identification of falls among older adults comparing information from HSCRC and MHCC using statistical means. They will merge external datasets that are publicly available to include in development of a risk score. Using the merged data sets, they will develop and validate the risk scores through logistic regression.

    Principal Investigator: Wendy Post

    Organizational Sponsor: Johns Hopkins Hospital (Johns Hopkins School of Medicine)

    Use Case: IRB-Approved, Patient-Consented Research

    CRISP Data Requested: Query Portal and ENS access for consented patients

    Summary: The Multi-Ethnic Study of Atherosclerosis (MESA) is a study of the characteristics of subclinical cardiovascular disease (disease detected non-invasively before it has produced clinical signs and symptoms) and the risk factors that predict progression to clinically overt cardiovascular disease or progression of the subclinical disease. MESA is funded by NIH with some additional supplemental funding by EPA and foundations. MESA researchers recruited a diverse, population-based sample of 6,814 asymptomatic men and women aged 45-84 from six field centers across the United States in 2000-2002. Approximately 38% of the recruited participants are white, 28% African-American, 22% Hispanic, and 12% Asian. The first examination took place over two years, from July 2000-July 2002. It was followed by four examination periods that were 17-20 months in length, and a sixth exam which started in September 2016. At 9 to 12 month intervals, participants or a family member are contacted to inquire about outpatient visits, hospital admissions, and deaths. Self-reported diagnoses are verified using medical records of outpatient visits and hospitalizations. For deaths, interviews with the next of kin and death certificates help to identify cause of death. Two physicians from the MESA mortality and morbidity review committee independently adjudicated all events using blinded records. There are over 1000 published manuscripts including MESA data. For more information see https://www.mesa-nhlbi.org

    Principal Investigator: Christopher Welsh / Jan Gryczynski

    Organizational Sponsor: University of Maryland Medical System / Friends Research Institute, Inc.

    Use Case: IRB-Approved, Patient-Consented Research

    CRISP Data Requested: Query Portal and ENS access for consented patients

    Summary: Substance use disorders (SUD) are strongly associated with repeat hospital admissions. A major contributor to rehospitalization for individuals with SUD is lack of adherence to hospital post-discharge plans for outpatient medical care and substance abuse treatment. Several factors influence such non-adherence for this population. These include difficulty navigating systems of care, concrete barriers to treatment entry (e.g., lack of health insurance and transportation), and low motivation for medical and/or substance abuse treatment. The goal of the Navigation Services To Avoid Rehospitalization (NavSTAR) research project is to assess the value of care navigation services delivered to hospital patients with SUDs. NavSTAR will employ evidence-based patient navigation and motivational intervention strategies initiated during hospitalization and continued for three months post-discharge. Navigators will work closely with patients to increase motivation and resolve barriers to entering appropriate outpatient medical and substance abuse treatment services. This two-arm randomized controlled trial (RCT) will evaluate NavSTAR for patients hospitalized for medical/surgical problems who have a comorbid substance use disorder. Adult hospital patients with a SUD for opiates, cocaine, or alcohol (N=420) will be randomly assigned to NavSTAR or treatment as usual (TAU). Research follow-ups will be conducted at 3-, 6-, and 12-months post-discharge. This RCT will examine the effectiveness, cost-effectiveness, and cost-benefits of NavSTAR for the primary outcome of rehospitalization, as well as other important medical and substance use outcomes.

    Principal Investigator: Gregory Kirk

    Organizational Sponsor: Johns Hopkins University

    Use Case: IRB-Approved, Patient-Consented Research

    CRISP Data Requested: Access to Encounter Notification Service and Clinical Query Portal for consented participants in the study.

    Summary: The AIDS Linked to the IntraVenous Experience (ALIVE) Study uses a prospective, observational cohort design to follow persons 18 years of age or older with a history of injecting drugs in Baltimore. Since inception in 1988, ALIVE has followed participants systematically with study visits every 6 months and with comprehensive evaluation including both nurse and interviewer-administered as well as computerized questionnaires, a focused clinical examination and collection of blood samples. The primary objectives of the study include characterization of the incidence and risk factors for blood borne infections, the natural history of injection drug use, the natural and treated course of HIV infection and the impact of coinfection and comorbidities in the setting of HIV. Since inception, >5000 persons have been enrolled into the study. Currently in follow-up, we have ~1,100 active participants including both HIV-infected (~30%) and HIV uninfected (70%) persons to allow appropriate comparisons and evaluation of HIV-specific effects. ALIVE is one study supported by two grants from the National Institute on Drug Abuse – ALIVE I and ALIVE II which follows the HIV-infected and HIV-uninfected participants, respectively. All subjects are initially enrolled into the ALIVE-2 study which covers the basic study protocol. HIV infected persons also provide informed consent for ALIVE-1.

    Principal Investigator: Josef Coresh

    Organizational Sponsor: Johns Hopkins Hospital (Johns Hopkins School of Medicine)

    Use Case: IRB-Approved, Patient-Consented Research

    CRISP Data Requested: Query Portal and ENS access for consented patients

    Summary: The Atherosclerotic Risk in Communities (ARIC) Study is originally designed to characterize natural history of cardiovascular disease (e.g., coronary heart disease and stroke) and identify cardiovascular risk factors. ARIC is funded by NIH contracts and grants. ARIC researchers recruited a population-based sample of 15,792 men and women aged 45-64 from four field centers across the United States. Approximately 73% of the recruited participants are white and 27% African-American. The first examination took place over two years, from 1987-1989. It was followed by four completed visits, and a sixth visit exam is currently ongoing. At 6- to 12- month intervals, participants or a family member are contacted to inquire about hospital admissions, major clinical procedures/diagnoses, and deaths. Self-reported diagnoses or relevant events identified by active surveillance are verified by a physician-panel using medical records. For deaths, interviews with the next of kin and death certificates help to identify cause of death. There are over 1600 published manuscripts including ARIC data. We are requesting CRISP access for ARIC participants that signed consent at the Johns Hopkins University Field Center to access their data. For more information see https://www2.cscc.unc.edu/aric/desc

    Principal Investigator: Hadi Kharrazi

    Organizational Sponsor: Johns Hopkins University / Johns Hopkins Center for Public Health IT

    Use Case: Linking and Enhancing Multiple External Data Sets

    CPHIT has already requested and received the HSCRC Public Use Data Files for use with this project, including both inpatient and outpatient records. Under the approved request for public use data, we are working with CRISP to link records for individuals across the HSCRC and other data sets using an encrypted study identification number. We are now requesting supplemental confidential data to improve the reliability and validity of our analyses. CRISP will apply the encrypted study ID to a file containing the approved confidential data elements, which will allow linkage with the public use data already at CPHIT.

    Summary: Johns Hopkins CPHIT (researcher), The Maryland Department of Health (MDH) Behavioral Health Administration (BHA, prime), and the Chesapeake Regional Information System for our Patients (CRISP, subcontractor) were awarded a Harold Rogers Prescription Drug Monitoring Program by the Department of Justice (DOJ), Office of Justice Programs (OJP), Bureau of Justice Assistance (BJA). The funding was awarded under CATEGORY 2: PDMP PRACTITIONER AND RESEARCH PARNERSHIPS in which the goal is to strengthen prescription drug monitoring program (PDMP) efforts, to develop and test innovative strategies for opioid abuse and addiction, and to implement evidence-based approaches that demonstrate the impact of expanded use of PDMP data to support patient and provider decision-making. The grant, entitled Predictive Risk Evaluation to Combat Overdose Grant (PRECOG), will focus on addressing the opioid addiction and overdose epidemic currently facing Maryland. This project will combine multiple disparate datasets to identify risk factors related to this epidemic through the development of a predictive risk model. Predictive risk modeling is a scientific methodology used to identify individuals with an elevated probability of experiencing an adverse event. Using quantitative data, patterns of risk may be identified that are not immediately evident to front-line practitioners, allowing for more effective targeting of resources to individuals who would benefit from timely, focused interventions.

    Principal Investigator: Gregory Lucas

    Organizational Sponsor: Johns Hopkins Hospital (Johns Hopkins School of Medicine)

    Use Case: IRB-Approved, Patient-Consented Research

    CRISP Data Requested: Encounter notifications and CRISP Query Portal access

    Summary: This study is a cluster-randomized trial to assess the impact of a new integrated care van (ICV) that will accompany the Baltimore City Health Department needle exchange van. The ICV will provide a range of medical services relevant to people who inject drugs (PWID), including rapid HIV testing, HIV co-management (with a primary clinic), pre-exposure prophylaxis (PrEP), initiation of medication assisted treatment for opioid-dependence with buprenorphine/naloxone, hepatitis C virus (HCV) testing and referral to treatment, and wound care. We will randomize roll-out of the ICV among 12 existing needle van stops in Baltimore neighborhoods. During the assessment period, 6 stops will receive the ICV intervention and 6 will not (usual care). To assess outcomes, we will enroll cohorts of 50-60 participants per stop (maximum of 760) prior to intervention roll-out. Participants will complete study visits at baseline, 6 months, and 12 months.

    Principal Investigator: Mariana Lazo

    Organizational Sponsor: Johns Hopkins Hospital (Johns Hopkins School of Medicine)

    Use Case: IRB-Approved, Patient-Consented Research

    CRISP Data Requested: CRISP Query Portal access

    Summary: The MACH15 Study is a large, international, multi-center clinical trial on the effects of moderate alcohol consumption on cardiovascular disease. The study population is adults aged 50 and older at above average cardiovascular risk. About 7,800 participants in up to 20 locations around the world are expected to take part in this study. There will be about 500 individuals will be enrolled in the study at the Hopkins site.

    More Information for Researchers

    If you are a researcher from an organization that participates in CRISP, you can learn more about making a data access request on our Information for Researchers.