The Cancer Information Services (CIS) shared resource program of UPMC Hillman Cancer Center took the initiative of developing the first cross-divisional, collaborative honest broker service. The initial application was submitted to the University of Pittsburgh Institutional Review Board (IRB) in April 2003 and continues to be recognized as a “gold standard” honest broker system model for optimal collaboration by UPMC and the IRB. This system provides support to major research projects such as the Specialized Programs Of Research Excellence (SPORES), Early Disease Research Network (EDRN), the National Mesothelioma Virtual Bank (NMVB), the Lung Tissue Research Consortium (LTRC), the Womens Cancer Research Center (WCRC) and the Cancer Genome Atlas Project (TCGA) research efforts, and is available to work with your program to strengthen your research initiatives.
Mission of the Service
The mission of this Honest Broker Service is to ensure compliance with specific regulatory agency guidelines, including the Office of Human Research Protection (OHRP) of the Department of Health and Human Services (HHS), the Health Insurance Portability and Accountability Act (HIPAA) and UPMC/University of Pittsburgh Institutional Review Board (IRB) policies and procedures for the release of information, specifically protected health information (PHI), involving data stored in applications developed, managed and/or utilized by the members of this service through de-identification of PHI.
Goals and Functions of the Service
In addition to ensuring compliance, the goals of this service include:
- Enhance Collaborative Research Efforts Between Centers
- Centrally Approve Requests and Review of Supporting Documentation
- Centralize Training and Management of Brokers
- Maintain a Web-Based Request Tracking Tool
- Monitor Requests for Data and/or Biological Materials
- Quality Assurance and Process Improvement
- Marketing (Strategic Planning, Market Share, Patient Support Services, etc)
- Preparation for Research
- IRB-Exempt Non-Human Subjects Research
- IRB-Approved Human Subjects Research
The research functions of an honest broker help to ensure “honest” research through de-identification of protected health information. An honest broker is an individual, or system, acting on behalf of the researcher to collect and provide de-identified information/samples to the research team. In most cases, the honest broker systems are set up to obtain and provide clinical/medical records, data and specimens. An honest broker must have normal access as part of their job responsibilities to the data, medical records, specimens, etc. that they will be obtaining and de-identifying. By nature of the honest broker’s clinical role, they are permitted to access data available in the variety of electronic medical record (EMR) systems based on the data needs for the project. The honest broker retains the identifiers for cases involved in a project, removes such identifiers from the data set to be used by the investigator and applies a “linkage code” to each case for each project.
If a project requires both biological materials and clinical oncology data, multiple honest brokers in this system will work together to “connect” the biological materials to the associated data annotation through use of the “linkage code” to complete the information and materials needed for the project.