An Interview with Barbara Wheeler

Barbara WheelerAn interview with Barbara Wheeler, Ph.D., R.N.  Associate Director of the USC UCEDD and Associate Professor of Clinical Pediatrics in the USC Keck School of Medicine.

Describe your current NIH-funded projects on inclusion of minorities in research.

In 2002, the NIH recognized that for the nation’s investment in scientific discoveries to change the lives of people, it was critical to move into a new research paradigm, which builds public trust in research and scientific endeavors. 

 Beginning in 2008, Dr. Clara Lajonchere and I received two grants from the NIH which focused on increasing the representation of Latino families in biomedical research on Autism Spectrum Disorders (ASD): A Model for Inclusion of Minorities in Genetics Research on Autism (2008-2009) and Disseminating Scientific Information on ASD to the Latino Community (2009-2011). Our collaboration started with Dr. Lajonchere’s recognition that the NIH was moving towards policies which required large scale research studies to have effective strategies for doing outreach to racial and ethnic groups that are not well represented in biomedical research. Our goal was to generate new knowledge in conducting culturally sensitive and inclusive research for use by the research community and organizations concerned with Latino beneficiaries of biomedical research.

How does your research encourage greater inquiry and involvement by minority communities and foster an appreciation of the societal implications of knowledge gained from this research?

First, findings from these two projects provide preliminary but promising evidence that an academic/community partnership is an effective way to increase the involvement of Latino families in biomedical research in autism. When researchers work with a community-based organization, they are likely to be much more effective in reaching hard to reach subjects and building a trust with these groups because they are associated with a community organization that has already earned their trust. 

Second, the NIH has made it a priority for scientists to educate the public. Dr. Lajonchere is well known for her interest and commitment to bringing information about biomedical research on ASD to the Latino community. In our second project, we had engineering, occupational therapy, and psychology graduate students develop and disseminate our first eight Science Briefs to small groups of Latino families that had one or more children with ASD. We found that our subject’s knowledge of what was in the Science Briefs significantly increased after reading and hearing the Science Brief and attending these sessions with future scientists.

What are mechanisms for keeping minority communities informed and updated on research developments?

While not definitive, the evidence we collected over our two projects suggests that community research ambassadors are an effective mechanism to increase the trust Latino families have in research. They were very effective in recruiting subjects for both of our projects and the attendance at our research activities was extremely high (97% attendance for our second project). Research ambassadors are also very useful in reviewing the protocols and research instruments (e.g., interview questions and demographic surveys) for cultural sensitivity.

Although we are still analyzing our data, we have preliminary evidence that reducing the information contained in published biomedical research articles into lay Science Briefs is effective in increasing the knowledge of Latino families about autism research findings. This is a very important finding which has implications for meeting the NIH’s goal to bring scientific discoveries to the lay public.

Barbara Wheeler is the Associate Director of the USC UCEDD affiliated with the University of Southern California and Childrens Hospital Los Angeles. She has spent much of her career exploring ways to assure access to information and systems by under-represented groups, including individuals with intellectual disabilities and individuals and their families from diverse racial, cultural, and linguistic groups. She is currently Co-PI for an R03 NIH Partners in Research Grant and Co-PI for an NIH Challenge Grant--Partners in Research: Pathways to Translational Research (RC1). Both grants were awarded to the USC Viterbi School of Engineering, which is the home of the NIH-funded USC Center for Genomic and Phenomic Studies of Autism (Clara Lajonchere, PI and VP for Clinical Programs, Autism Speaks). These grants focus on increasing the involvement of Latinos with ASD and their families in bio-medical and genetic research on ASD and increasing science literacy in this population, using Fiesta Educativa as a community partner for researchers.