Consider Nurses to Help Improve Racial and Ethnic Disparities in Clinical Research

It is known in the clinical research world that disparities exist when it comes to clinical trials participation.  In fact in some sectors of research this represents a significant problem including Alzheimer’s Disease, Oncology, etc.  Moreover there is plenty of research that minority groups such as African Americans and Latinos generally receive inferior health care services to other groups.  There is a horrible legacy to overcome–although decades ago there are still memories such as the Tuskegee experiments; see  There is a significant body of research addressing lack of African American (and minority or persons of color) participation in clinical research trials –we include some references for reader’s review below.
African-American Participation in Clinical Trials: Situating Trust and Trustworthiness
Recruitment of African-Americans to National Oncology Clinical Trials through a Clinical Trial Shared Resources
Challenging Assumptions About Minority Participation in Clinical Research
High Incarceration Rates Among Black Men Enrolled in Clinical Studies May Compromise Ability to Identify Disparities
A Legacy of Mistrust: Research and People of Color
Five Unethical Medical Experiments that Used Black People as Guinea Pigs
African Americans Often Say No to Clinical Trials
TrialSite News will commit to continuously helping to shine a light on disparities in clinical research including participation rates.  Our mission is that of bringing transparency to clinical research worldwide. The United States, the third most populous country in the world,  represents a thriving, multicultural population and our ultimate goal is the best health care for all. Although minority populations continue to grow and will represent the majority in some states in the not too distant future, there are significant and material health inequalities including participation in clinical trials.  There are many African Americans and Latinos, for example, in the United States, that would greatly benefit from participation in clinical research. We have been involved with patient recruitment initiatives in years past and have a general understanding that there is lack of sufficient trust in health care institutions, from pharmaceutical and biotechnology commercial sponsors to academic medical centers to health systems. 
TrialSite News has initiated a series of surveys first with African American populations to determine what would help bring more African Americans into clinical research participation. As we yield results we will report them to the readers.  Maggie Smith writing for Oncology Nursing News addresses the topic of disparities.  Ms. Smith is a Field Medical Director in GU Oncology for Pfizer as well as Director-at-Large for the national Oncology Nursing Societ (ONS) as well as Nominating-Chair and Immediate Past President of the Chicago Chapter of ONS. On to Maggie Smith’s article in Oncology Nursing News.
When looking at the overall, general health status of Americans, minorities have the highest rate of fair/poor health status compared to other races or ethnicities. Clinical trials are very common in oncology practice and are frequently led by investigators from academic institutions; however, less than 2% of the NCI clinical trials have a minority population as their primary emphasis.1

There are many factors that contribute to the lack of participation among minority populations in clinical trials, including trust, socioeconomic status, and education status to name a few. Many of these factors are outside of a nurse’s control. But there are some ways nurses can make a difference. To start, nurses can increase minorities’ awareness of and participation in clinical trials.Nurses have consistently been ranked as the most trusted professionals in Gallup polls year after year.3 Our active participation in the healthcare system can improve outcomes and reduce disparities.
We can influence patients’ health status directly through hands-on care, and indirectly by engaging patients in their treatment. Here are 5 tips to implement the next time you are engaged in a clinical trial discussion with a patient from a minority population:

  1. Be aware of your assumptions. As a provider, evaluate your own assumptions and values about what constitutes a “good patient,” who would be eligible for an appropriate clinical trial, and consider how these affect your communication strategies with your patients. Bias may be inherent, and it may help to actively think about which patients you might, and should,  recommend for clinical trial participation.  Questions to ask yourself before engaging with patients from a different race or ethnicity should be: Am I being biased? Am I stereotyping and assuming things about my patients before I ask a question? Am I practicing with clinical uncertainty?
  2. Acknowledge that patients may be actively involved in health maintenance long before they seek medical care. Some people choose to use complementary medicines that may affect cancer clinical trial eligibility. In some cultures, these may be more prevalent. St. John’s wort, for example, a complementary alternative medicine indigenous to Europe, West Asia, and North Africa, is commonly used among cultures originating in those regions.4 St. John’s Wort has been shown to be effective in treatments for mild depression, smoking cessation, premenstrual symptoms, somatoform disorder, and attention deficit hyperactivity disorder, and may have a role in treating cancer and HIV. However, in oncology, some clinical trials do not accept patients who use this therapy. So, having this discussion with your patient in advance can help to avoid confusion and potential clinical trial exclusion.
  3. Support language interpretation services in the clinical setting. This can help patients become compliant with treatments and understand what is required of them in relation to their health and increase patient satisfaction.
  4. Practice with cultural competence. Sometimes negotiation is needed between the patient and the provider to change a patient’s behavior. Try using the LEARN acronym:
    • Listen with sympathy and understanding
    • Explain your perception of the problem that the patient is faced with;
    • Acknowledge and discuss the differences and the similarities in views with the; problem faced by the patient;
    • Recommend treatment; and
    • Negotiate an agreement with the patient.5
  5. Provide accessible and understandable resources. These can empower the community to become active in ending disparities. Engage the community by connecting with outreach workers, pastors and other influential providers that can help reach diverse populations to help patients and communities to become familiar with the healthcare system.
  6. References
    1. Chen MS, Lara PN, Dang JH, Paterniti DA, Kelly K. Twenty years post-NIH revitalization act: Renewing the case for enhancing minority participation in cancer clinical trials. Cancer. 2014;120(7 suppl):1091–1096. doi: 10.1002/cncr.28575.
    2. Ford JG, Howerton MW, Lai GY, et al. Barriers to recruiting underrepresented populations to cancer clinical trials: A systematic review. Cancer. 2008;112(2):228-42. doi: 10.1002/cncr.23157.
    3. Brenan M. Nurses keep healthy lead as most honest, ethical profession. Gallup website. Published December 26, 2017. Accessed August 31, 2018.
    4. St. John’s wort. The Asco Post website. Accessed Aug. 31, 2018.
    5. de Bocanegra H, Gany, F. Good provider, good patient: Changing patient behavior to eliminate disparities in healthcare. Am J Manag Care. 2004;10: SP20-SP28