Lancer Stephens, MS

Special Populations Unit Executive Director

Thank you for visiting the Special Populations Unit of the General Clinical Research Center at the University of Oklahoma Health Sciences Center.  You may not be aware, but the GCRC at OUHSC is the only one in the country with a Special Populations Unit (SP Unit).  The reason for this is very simple.  Oklahoma has a large minority population, especially when it comes to American Indians. 

Census figures show that the American Indian population is the second largest population (~10%) within Oklahoma.  Seeing that Oklahoma contains the headquarters of 38 federally recognized tribes, this figure makes sense, and in the opinion of many individuals, we think this figure is actually on the lower end of reality.  Our current patient population that identifies themelves as American Indian is more than triple the census figure.

The SP Unit was the brainchild of collaboration between the OUHSC and the National Institutes of Health, National Center for Research Resources.  Both NIH and OUHSC researchers had long noticed the lack of involvement of American Indian and other minority populations into research studies even though those minority populations within the state were very high.  It was of the opinion that word just wasn't getting out of the opportunities to participate in clinical research and that there was still a lack of trust from minority communities toward research practices and perceived benefits.

Therefore the SP Unit was developed for Oklahoma's GCRC and with it began the process of education.  Not only education of minority populations about clinical research, but also of researchers that may be unfamiliar to minority communities and customs. 

For minority communities, the SP Unit traveled to tribal leaders and Indian clinics to talk about research, the importance it may have to them, and the patient safety issues for those wishing to take part.  Each of our approved protocols must have clearance both for patient safety and scientific merit through their funding agency, the OUHSC Institutional Review Board, the General Clinical Advisory Committee, and in those protocols that wish to target American Indian populations, through tribal IRBs, if available, or through letters of recommendation from appointed tribal council leaders.  Should any protocol not meet the strict requirements of the above mentioned, then it is not one that will come through our center.  We believe patient safety is the number one priority, and we will not risk doing anything to bring distrust to our center and our goals to continue working with minority populations.

Education of the OUHSC researchers was an issue not originally thought of as being a problem with having minority input into clinical research, but it quickly became clear that it was an issue that could not afford to be overlooked.  The SP Unit has made it a process of meeting with any researcher interested in working with minority communities to educate them on the various customs and cultural beliefs they may be introduced to upon traveling to other locations within the state.  With mutual respect and a desire to understand each other, we have been pleased to see a dramatic increase in the partnerships between OUHSC and minority communities in research practices. Our patient population is currently above 50% Native American, which is quite remarkable considering the average for American Indian participation was less than 2% in 2001.

Overall, the main objective of the GCRC Special Populations Unit is to catalyze the research involvement of members of Native American and other minority communities in the area served by OUHSC. The SP Unit addresses in a proactive fashion the collective concerns of special populations about participating in research projects of the GCRC investigators. We serve as a culturally sensitive liaison between these populations and GCRC investigators. The SP Unit also provides training and consultation in ethics, issues of confidentiality and privacy, and cross-cultural research for all GCRC investigators.

An important need for clinical research in the post-genome era will be to ensure representation of minority populations. The SP Unit intends to address the issues related to minority population representation in clinical studies by accomplishing five goals:

1. To direct GCRC investigators in recruiting study and trial participants from minority populations.
   
   
2. To guide GCRC investigators in designing information canvassing, recruitment, and data collection and management procedures which conform to most recent privacy and confidentiality standards.
   
   
3. To educate minority populations about the importance of clinical research to future generations and to educate the GCRC investigators of the importance of minority participation in clinical research.
   
   
4. To establish on-going collaborations between communities and GCRC investigators for research of mutual interest.
   
   
5. To be available for consultation and to help address genealogic, behavioral, ethical, and cultural problems as needed by GCRC investigators.