Diversity Advisory Council Research Subcommittee responds to National Institute of Mental Health Request for Information

by Martha J. Falkenstein, PhD, Alberto Collazzoni, PhD, and Matthew Riello, BA

In Fall 2020, the National Institute of Mental Health (NIMH) sought a request for information on identifying research priority areas to improve the mental health outcomes of Americans from minority and health disparities populations.

The chairs of the IOCDF Diversity Advisory Council (DAC) tasked the Research Subcommittee with responding to this request on behalf of IOCDF DAC. This involved asking researchers and clinicians in the OCD field to provide areas with regard to minority mental health that are in need of further research studies.

The Diversity Advisory Council seeks to raise awareness of the issues and challenges confronting members of diverse communities with OCD. Our goal is to make sure that these underrepresented populations are included in the overall narrative of the OCD community. As members of the DAC’s Research Subcommittee, we hope to expand literature concerning the prevalence of OCD in minority groups and strive to increase the resources needed to fund relevant research and working on this request from the NIMH aligns well with our goals.

Below are 11 areas we have recommended for future research:

1.Treatment provider bias with regard to assessment and treatment of obsessive compulsive related disorders (OCRDs); many patients from minority backgrounds are underdiagnosed and consequently under-treated (e.g., see Chasson, Williams, Davis, & Combs, 2017 in BMC Psychiatry for article about missed diagnoses in African Americans with OCD).

2. Improving systems to include more minority members in research studies and studying how to improve recruitment and retention

3. Collecting data on the prevalence of OCRDs in minority populations as this is largely unknown

4. Whether or not certain personal and social characteristics of patients from minority backgrounds are related to OCD severity.  In particular, are there social and personal characteristics related to a minority background that act as resiliency factors to buffer against OCD?

5. Stigma: how belonging to a particular background influences the perception of OCD and treatment-seeking factors such as shame

 6. How cultural factors relate to type of obsessions and how they affect treatment-seeking

7. Cultural differences in conceptualizing family behavior such as how parents perceive mechanisms involved in their children’s symptoms and how to target them.  Determining what is appropriate to share or not share and ask them to do, given one’s cultural beliefs

8. Barriers to seeking or receiving treatment for OCD among those in minority groups

9. Involving minority community engagement (e.g. Focus groups, interviews from the community, and getting direct input)

10. Mental health literacy and funding for general education in primary care. General knowledge about OCRDs isn’t widely understood. Often, OCRD patients seek medical procedures when they have body dysmorphic disorder, trichotillomania, or skin picking. One potential solution is funding for training providers in vignette-style surveys.

11. Examining diversity among treatment providers for OCD and providers who provide assessments and treatments using culturally-informed, context-sensitive care

            Unfortunately, there is little literature and information currently surrounding these topics. Many clinicians are not well versed on culturally-sensitive issues and resources are scarce for OCD patients from diverse backgrounds. We hope that the current list provides promising areas for future research, aids OCD clinicians working with underrepresented populations, and improves treatment outcomes for everyone within the OCD community.