Guest Expert Dr. Claudia Baquet: Sowing the seeds of change--a successful model for engaging rural communities in research
Welcome to our Guest Expert, Claudia Baquet, M.D., Associate Dean for Policy and Planning and Professor of Medicine at University of Maryland School of Medicine. Dr. Baquet has a long and distinguished career as a physician, researcher and advocate for underserved populations. We are pleased to have Dr. Baquet share her research and her perspectives on the factors that contribute to developing a sustainable community-academic model to address issues related to clinical trial education and accrual.
From Dr. Baquet:
Rural underserved communities tend to get overlooked when it comes to clinical trials research. While we continue to advance our knowledge about innovative strategies for engaging racial and ethnic minority communities in clinical trials, we really have not learned as much about rural underserved Americans and how we might better involve them. For years in the course of my work, I have given thought to the unique participation barriers that rural populations face, as well as thinking about the barriers they may actually share with other special populations. This simple query helped form the basis for the research question that spawned a 13 year research project that we recently completed on the Eastern Shore of Maryland. Our research looked specifically at approaches to increasing clinical trials accrual for underserved rural communities.
This research underscores the importance of community partnerships in educating and informing special populations about biomedical research. We believe we have discovered an effective community engagement model that can:
- Increase clinical trials education,
- Improve research literacy,
- Enhance public trust, and
- Encourage clinical trial participation in rural communities.
The key to success in this model was combining the efforts of a trusted rural nonprofit community-based organization with the expertise and cache of an academic health center within that same community. We arrived at this conclusion through observing the partnership that anchored our research project: the alliance between Maryland community-based organization, the Eastern Shore Area Health Education Center, and an academic health center, the University Of Maryland School Of Medicine, Office of Policy and Planning. Interestingly, this model has been supported in earlier years by the National Cancer Institute (NCI) and in later years by both NCI and the National Institute on Minority Health and Health Disparities.
Our research uncovered some interesting information about attitudes related to clinical trials research among rural underserved populations. Principally, our findings indicate that rural populations appear to be more concerned with the ethical implications of biomedical research. For example, we found that rural communities expressed concerns about privacy protections in clinical trials, return of results especially related to genetic research, and had informed consent concerns and preferences. Older age groups preferred “one time consent” for clinical trial research that had biospecimen collection for storage and use in research at a later time whereas younger adult age groups preferred tiered consent and preferred to be contacted by the researcher every time their donated tissue was used for different research studies. Previous research on special populations and clinical trials accrual shows that most of the reluctance to participate, especially among racial and ethnic underserved populations, is the result of perceived risks from clinical trials; the fear of being a “guinea pig” or of suffering harm from a research protocol.
As always, we view our work as one piece of a larger puzzle that fits together to help solve the cancer disparities puzzle. Ultimately, we are looking at this research to help us take another step forward in increasing the trial availability and accrual of diverse and underserved communities. Here are some other highlights of our findings:
- Promotion of open trials and recruitment of trial participants should be roles of the community organization.
- From the very beginning, community clinical trial education was a significant part of this model and later bioethics education became a major component as we learned that ethical concerns of the public were a major barrier to research participation and biospecimen donation.
- The partnership between the community organization and the academic center must be intense and sustained and must involve a significant time investment beyond the “9-to-5” workday.
- The partnership must be bidirectional in every aspect with both partners having roles in research protocols and structures.
- It was thrilling to observe the increase in “research literacy” about clinical trials participation both among the rural residents and the community-based physicians and nurses.
- Holding community educational programs on clinical trials and bioethics/research ethics (sometimes called “Mini Medical Schools”) can go a long way toward removing the stigma often associated with human subjects research.
This was an exciting study. It has opened more doors to help us understand how special populations view clinical trials research and how our communication about this important work relates to their lives and communities. I believe the information from this study gives us unique perspective that will lead to the development of more effective strategies for better involving our rural communities and other underserved areas in critical research that will improve cancer outcomes everywhere. You can read the entire report by clicking here.