I have been involved in psoriasis research since 2014 as a patient advocate. In many instances, I am the only person of color (POC) in the room. In the last year I’m proud to say I’ve seen an increase of involvement in psoriasis research for POCs, but we still have a long way to go from what I would consider as adequate and well-versed inclusion of POCs.
Currently research shows Caucasians are more likely to suffer from psoriasis than other ethnicities. I believe the current data is skewed, and it is not that POCs are less likely to suffer from the disease but are more so likely to be misdiagnosed with other conditions of the skin, which would be the reason why minorities are, reported to be less likely to suffer from psoriasis.
As a patient researcher, I have the opportunity to help guide groundbreaking psoriasis research that has attributed to many of the vast treatments and quality of care improvements we have seen recent years for psoriasis sufferers. Since I was first diagnosed with the disease 24 years ago, I have witnessed considerable advancement in a variety of areas concerning psoriasis. However, after reading numerous studies and being closely involved in research for psoriasis, I notice there is a huge problem with most psoriasis research — POCs are underrepresented in studies for psoriasis. Despite the federal mandate from the National Institute of Health, which has strict guidelines on the involvement of women and minorities for clinical trials, I personally think representation of minorities in current trials for psoriasis is not enough.
Why persons of color aren’t involved in psoriasis research
While only assumptions can be made, there are several theories as to why POCs, especially African-Americans, are not involved in psoriasis research, which include:
A distrust for the medical community.
Throughout history, African Americans have been used in scientific research to assist with the progression of medicine either against their will or due to deceitful misinformed tactics. Some of the most notable instances include the Tuskegee experiment, where African-American men with syphilis were put in a study under false pretenses and ultimately left untreated. As well as the sterilization and eugenics program, which forced unwanted hysterectomies on many low-income women predominately of color across the United States, some of the women were lied to and unaware they were being sterilized.
Barriers to recruitment strategies
I have overheard many talks from medical professionals on the difficulty of recruiting POCs due to the distrust previously mentioned. There are a few ways researchers pursue possible participants that include health magazine ads, non-profit organizations, doctors’ offices, or online clinical trial databases. Unfortunately, POCs are less likely to have access to care, seek out clinical trials, or subscribe to health magazines. There needs to be a better solution to enrolling a diversity of people.
While I discussed two challenges for the lack of POCs in research, there are many other factors, which include social, economic, and education.
Why do we need persons of color to participate in studies?
POCs have unique medical needs. If they are not accessed in clinical trials then we will continue to be at the short end of finding a successful treatment for our diseases. An example of differences from our Caucasian counterparts is the melanin in our skin. For years, I did phototherapy, which did not work. Could it be I needed more light intensity due to the myocytes of my skin?
Another example is the shampoos for scalp psoriasis. While people with naturally straight hair may wash their hair every day, those of us with curly or kinky textures do not, therefore a shampoo requiring use three to four times a week would not be conducive to a POC’s treatment regimen. These are just a couple of concrete examples, but there are many others.
Currently I am a part of a phototherapy study, which compares doctor office phototherapy versus home light treatment. One of the imperative objectives of this study is to recruit a high number of POCs to participate, which has not been achieved before.