Empowering people of color in clinical trials: a reflection on Martin Luther King Jr. Day

On this special day, we reflect on one element of racial representation in healthcare, that of inequality in clinical trials, and highlight an example of one woman, Karen Peterson, who is driving positive change for people of color.

Martin Luther King Jr. Day offers us the opportunity to reflect on the actions and legacy of the man who pioneered civil liberties for so many people. Dr King called for racial equality at a national level across all areas of life, including labor, politics, and healthcare, saying, “Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane.”1

Addressing underrepresentation of people of color in clinical trials

“Most clinical trials,” reports the Harvard Business Review,2 “are not representative of the general population.” Its data shows persistent underrepresentation of people of color in clinical trials.

Addressing this has become a priority for the healthcare community and Karen Peterson, Founder of Karen’s Club, a not-for-profit organization that supports patients of color who are considering taking part in oncology clinical trials.

“For me, as a person of color, trying to get into a clinical trial was difficult,” says Karen of her experience after her diagnosis of stage IV triple-negative breast cancer. “When I was seeking collaboration from healthcare providers, having those gatekeepers shut the door on me was heartbreaking. No-one should have to walk this journey alone when they are trying to make an informed decision about treatment, that’s why I started Karen’s Club.”

Empowering people of color with the knowledge to pursue clinical trials

Karen’s Club empowers patients of color with the knowledge and trust to pursue clinical trials that can save or extend their lives. It offers a safe space for patients of color where they can discuss and learn about participation in oncology clinical trials.

“Clinical trials can stir emotions of anxiety, fear, and distrust. It is important to have patient advocates who look like us, sound like us, and who can speak to the experience. One of the first questions I was asked by a new patient interested in clinical trials was, “Are they going to experiment on me?” and this is still a fear in 2021.

Clinical trials are not for everyone, but it is an option that should be discussed and not left off the table. As a patient trying to make an informed decision, you want to have all your ducks in a row; when you take away the information and options, the playing field is not level.”

Bridging the gap between people of color and providers of clinical trials

Information is empowering for Karen, and she shares her research through the club, webinars, and podcasts3 which address some of the key barriers to participation in trials, including social and economic factors, as well as examining the responsibilities of the healthcare professionals and trial providers.

“The doctor has to be open to meeting us where we are at; a lot of times, when a person of color comes in and the doctor mentions a clinical trial, they may get some push-back, so maybe the doctor can push a little further and ask if they can talk to their family members, ask if there is a reason why they are having difficulty with the idea of a clinical trial, if they have some pre-conceptions, is it a trust factor?, are there economic reasons?, is the place where the trial is being conducted too far away? Researchers trying to get people together for clinical trials must think about all these factors.

Karen’s Club wouldn’t be needed if the existing model was perfect and patients of color were participating at scale in clinical trials, but we’re not, so it is monumental that we have the relationships with pharmaceutical companies, with clinical researchers, with non-profits, with community-based organizations to bring everybody together to have honest conversations that build into solutions that’s what make us so different.”

Further reading

  1. Luther King M., Jr. Presentation at the Second National Convention of the Medical Committee for Human Rights, Chicago, 25 March 1966
  2. Giusti K, et al. Addressing Demographic Disparities in Clinical Trials. 
  3. Fishawack Health. Beyond the Molecule: How does Karen’s Club empower patients of color to take part in clinical trials? Podcast episode 5

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