|Search de-identified data from clinic visits at several Harvard-affiliated hospitals.||SHRINE|
SHRINE is a service available to Harvard Medical School faculty (Instructor or above) and Fellows employed by one of the five participating hospitals. Fellows must be sponsored by an approved faculty member. See Getting Started for details.
If you are not employed by a participating hospital, you may access SHRINE data indirectly under the following conditions:
SHRINE does not provide direct access to information about individual patients at any of the hospitals. To follow up with a potential cohort of interest, you will need to identify a collaborator at the institution where the patients were seen.
If you are not currently collaborating with an investigator at that institution and are not aware of others who might be doing similar research, you can use other resources on the Harvard Catalyst website to make a connection. For instance, Harvard Catalyst Profiles is a research social networking system that allows you to conduct keyword searches for collaborators at Harvard-affiliated institutions. You can search Harvard Catalyst Profiles using the Search box at the top right corner of every page on this website.
The system currently has a complete set of data for demographics and diagnosis. There are partial data sets for medications and laboratory values. Data begin in 2001 and the quality/completeness reflect what was available based in each institution's electronic medical record system.
The timeframe at the participating SHRINE hospitals for Demographics, Diagnoses, Medications, and Lab Tests covers the period 1/1/2001 - 6/30/2014.
Future major releases of SHRINE may include access to more detailed data. There are currently no plans to provide full datasets.
As an additional way to protect patient privacy, we blur the aggregate patient counts so they are an estimate of the actual number. If you run the same query more than once, you will receive slightly different results each time. The system is designed to lock out users who run the exact same query too many times. If you would like to find out more about the obfuscation process please see "A Security Architecture for Query Tools used to Access Large Biomedical Databases" (Murphy, SN and Chueh, HC, Proc AMIA Symp. 2002:552-6).
If the user experiences issues with queries where one or more institutions never returns a result, or returns “no results available,” it may be a result of a query that is linked to an extremely high number of codes at local institutions. Such issues are most likely to appear when several commonly used medications are queried together. While queries of individual terms should never lead to this issue, querying more than 5 common medications may cause this result.
No, the IRB at each participating institution has declared by an expedited review that aggregate data counts are not "human research" and as such are exempt from the IRB review process.
SHRINE has been independently approved by the IRBs at each of the participating institutions and at Harvard Medical School.
The Data Steward refers to both an application, the Data Steward application, and a person, the Data Steward administrator. The Data Steward application collects information about the types of queries an investigator would like to perform in SHRINE. The Data Steward administrator reviews each request to perform queries and, if appropriate, approves them. Before approving a query, the Data Steward administrator may contact investigators to get more information about how they hope to use SHRINE. Query requests MUST be submitted and approved before a registered investigator can begin using the system.
This process is an electronic workflow that consists of the following steps:
A query topic is the general subject that you as a researcher are interested in studying by seeking access to defined subjects from across the hospitals. For instance, "irritable bowel syndrome", "pancreatic cancer", "diabetes type 1". (More detailed examples are found on Getting Started: Query Topic Approval.)
Once your general query topic is approved by the Data Steward administrator, you may conduct as many individual queries as you like to learn more about your general topic. For instance, you may wish to look at gender differences, breakdown by race, in combination with other diagnoses, by age range, etc. As long as these individual queries are related to your general query topic, you are free to explore your topic in whatever depth is currently available.
Each of your individual queries is logged and will be reviewed by the Data Steward for compliance with your approved query topic. Violation of the Terms of Access Agreement will result in a misconduct review by your institution and, if appropriate, by Harvard Medical School.
i2b2 (Informatics for Integrating Biology and the Bedside) is an NIH-funded National Center for Biomedical Computing based at Partners Healthcare. i2b2 has developed a software suite (typically shorthanded to "i2b2") that can be installed "on top of" an existing research patient data repository to enable easy and logical manipulation of the data contained within that repository. Each of the Harvard SHRINE hospitals has installed a version of that software suite and thus can be easily linked by a web-based query (SHRINE).
The system shows a subset of medications for those practices that record this information. A complete set will be included in the next release of the software.
No, not directly through SHRINE.
SHRINE does not allow direct access to patient records.
The system architecture is configured with the following protections in place:
Read the Terms of Data Access agreement to understand the rules governing access to data.
A pilot implementation of SHRINE as a demonstration of the feasibility of a national research network.