The Research Patient Data Registry (RPDR) is supported by the dedicated team of nearly a dozen developers and support personnel. RPDR is the centralized clinical data registry/warehouse directed by Research IS & Computing ‘s Director, Shawn Murphy, M.D. PhD. The RPDR gathers data from hospital systems and stores it in one place, bringing clinical information to a researcher’s fingertips and ensuring the security of patient information.
Overview of the RPDR
The Research Patient Data Registry (RPDR) is a centralized clinical data registry, or data warehouse that gathers clinical information from various Partners hospital systems. An online Query Tool allows researchers to explore clinical data through a self-service system in order to:
- Assess clinical study feasibility
- Identify patients for clinical trials
- Investigate hospital operations and patient care
- Provide identified patient data with approved IRB protocol
- Find control patients for previously defined populations
- Query for patients with blood samples in the Partners Biobank
- Supply a workbench that allows viewing for MGH and BWH Radiology images
The RPDR 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 online search in real time results in a faster data turnaround with extensive specificity of patient criteria.
Functions of the RPDR
The RPDR has two related but separate functions:
- The online query tool provides users with aggregate numbers of patients that meet user-defined characteristics and criteria such as diagnoses, procedures, medications and/or laboratory results.
- The Data Request Wizards allow the user to ask for more detailed medical record information on the identified patient population. This process requires an approved IRB protocol.
Obtaining access to the RPDR
In order to use the RPDR, a person must first become registered in the RPDR system. Registration is handled differently for faculty vs. non-faculty members.
- A faculty member is defined as an attending physician or other research staff (such as a PhD or nurse researcher) who has a title of Instructor, Associate Professor, Assistant Professor, Professor, or Lecturer at the Harvard Medical School (HMS). Additionally, in order to become an RPDR user, the HMS user must be affiliated with a Partners institution. Faculty members can self-register to become a Faculty Sponsor from the RPDR homepage at (http://RPDR).
- A non-faculty member is eligible to use the RPDR as a workgroup member. The Faculty Sponsor (Workgroup Leader) can add non-faculty members to their RPDR workgroup. Access will then be granted to the RPDR for the non faculty member. Faculty Sponsors can add workgroup members from the RPDR homepage at (http://RPDR).
*Note: http://RPDR (this link is internal only and requires Internet Explorer; you must be logged on to a Partners workstation or connected to the Partners network via VPN)*
Getting to the RPDR query tool
The RPDR query tool can be accessed through various entrance points once a user has been granted access.
- RPDR home page, click on the “Launch RPDR Web Query Tool” link
- Partners workstation, click on Start menu, hover over Partners Applications and select Research Patient Database Enhanced Query Tool
- Partners Portal page via VPN, select ‘Partners Applications’ ->’MY CITRIX APPS’ and then ‘RPDR Web’. Citrix will need to be installed before launching the Portal Page.
Tools Available in the RPDR - locked page
The Partners Biobank Portal is a tool that links consented subjects from the Partners Biobank with their healthcare data from the electronic medical record (EMR) and allows researchers to request clinical samples for these subjects. Users must have a valid Partners logon and be a registered Research Patient Data Registry (RPDR) user to use the Portal.
In addition to comprehensive electronic medical record data, the Biobank Portal includes:
- Biobank Health Information Survey, which provides patient-reported lifestyle, environment and family history information
- Curated Disease Populations is defined as sets of subjects within the Biobank population who have been statistically determined to have a particular disease such as type-ll diabetes, rheumatoid arthritis, congestive heart failure and others.
- Healthy Populations is an index that statistically groups patients by co-morbidities in order to help select relatively healthy controls from the Biobank population.
- Biobank Sample Types are available in the Biobank including DNA, plasma and serum. Acquisition of Biobank specimens requires an approved IRB protocol.
Researchers can use the Biobank Portal to identify eligible case and control subjects, request samples, and perform analyses related to using consented samples for research.
mi2b2 - Medical Image Access Tool
The Medical Imaging Informatics Bench to Bedside (mi2b2) workbench serves as a secure bridge between a researcher and the Partners PACS systems, which aims to:
- Facilitate searching for, previewing, and accessing clinically acquired images that are stored in several PACS (Picture Archive and Communication System) systems that serve the Partners institutions
- Enable researchers to extend the use of the Research Patient Data Registry (RPDR) to access clinical images on patients of interest for enhanced research studies, with proper IRB approval
- Allow for the download of DICOM images from the PACS system
- Provide access to only patient images authorized by approved IRBs and provide audit trails for HIPAA compliance.
Detailed tutorial support for new users of the mi2b2 software is found at http://mi2b2help.partners.org.
A new initiative, the Partners wide Big Data Commons, enables Big Data to be integrated with the RPDR and tighter integration of the RPDR with Epic. The specific areas of focus of the Big Data Commons are to create a Research Patient Portal for direct patient engagement in Epic, creating a distributed query system to allow more types of Partners Big Data to be integrated and become discoverable by researchers, and specific integration platforms such as the Biobank Portal which serve to researchers new forms of Big Data in easily consumable forms.
Plans, goals, timelines and progress will be updated in this space when they are available.