Overview

The Research Patient Data Registry (RPDR) is a centralized clinical data registry, or data warehouse. The RPDR gathers data from various hospital legacy systems and stores it in one place. Researchers access this data using the RPDR online Query Tool. They may query the RPDR data for aggregate totals and, with proper IRB approval, obtain medical record data. The RPDR brings clinical information to the researcher's fingertips and ensures the security of patient information by controlling and auditing the distribution of patient data within the guidelines of the IRB and with the use of several built-in, automated security measures.

The use of this application compares and contrasts with prior patient cohort search methodologies such as medical record review and the use of Information Systems requests. All of these methods ultimately return a set of patients that match certain criteria. They differ in that the RPDR allows the user to perform the search on-line in real time, resulting in faster turnaround and with extensive specificity of patient criteria. The alternatives leave the confidentiality of the Partners’ patient much more exposed, often returning entire medical records when only focused information is required.

The RPDR has two related but separate functions. First, an online Query Tool provides users with aggregate numbers of patients with user-defined characteristics such as diagnoses, procedures and/or laboratory results. Patient identifiers are not available at this function level. Secondly, the RPDR Data Acquisition Engine (DAE) allows the user to receive more detailed medical record information about the queried patients.

Designed originally for the research community, RPDR development has included consultation and approval by the Partners IRB from the start. The goal to provide clinical investigators with the ability to perform population queries for grant applications, pre-trial patient cohort identification, and outcomes research has coincided with the implementation of HIPAA security and patient confidentiality standards. Due to this ongoing IRB and RPDR collaboration, the RPDR is HIPAA compliant from both the technical and operational system foundations. Therefore, security is imbedded into each operational and technical phase of the RPDR application.

RPDR Technology

The RPDR data warehouse is a Microsoft SQL database and sits on a Windows server, supported by the Partners IS server team. Data in the RPDR can be accessed from Partners workstations and from Macintosh machines via connection with the Citrix program. Please see Special Solutions for RPDR Access for more information. The Web-based, front-end Query Tool requires users to have MS Explorer 4.0 or greater and is not accessible via Netscape.
Summary of RPDR features:

• Partners’ patient database system designed for investigators, with HIPAA compliant access to data on millions of Partners patients
• User-friendly Query Tool for efficient, online access to complex query formation, including alphabetical lookup of query items
• Availability of query items such as diagnoses, laboratories, and demographics (see the RPDR Data Dictionary for a complete list of query items)
• Access to all Previous queries, and building upon prior queries.
• Automated, on-line Help, Tutorials and Faculty registration via web address: http://rpdr
• Identified patient data such as encounters, laboratories, operative notes, discharge summaries (see the RPDR Data Dictionary for a complete list of data items), is vailable to researchers in a secure Access database with IRB approval.
• Security across all operational and technical phases of the system
• State-of art-technology with Partners IS support

Registration and Partners Intranet Access

BWH and MGH faculty are eligible to become Faculty Sponsors and to create Workgroups. Eligibility of Faculty Sponsors is determined during RPDR registration. Sign-on to the application requires that the system recognize the Partners logon and password of the confirmed user. The Faculty Sponsor may access the RPDR Query Tool from among the Partners’ applications via the Start windows command. Faculty Sponsors may utilize the Query Tool themselves and/or add Workgroup members from their research teams.

Click here for more detailed information on the RPDR including images (link is internal only, requires authentication with Partners username and password)

Click here to register as a user (link is internal only, works only in Internet Explorer 4.0 or greater and requires authentication with Partners username and password