PatientsLikeMe Out of the Office: Priya Raja talks about cervical cancer awareness

Hi there everyone, my name is Priya and I work as a research assistant on the Health Data Integrity Team at PatientsLikeMe!  Given that it’s cervical cancer awareness month, I wanted to share with you all a global perspective on why screening can be so important. While a Pap smear is something that most women receive during routine visits to the gynecologist, this screening test is unfortunately out of reach for many women around the world. The consequence? Women can show up at the clinic with cervical cancer that has spread throughout their body. And in countries that are resource-strapped for treatments like chemotherapy and radiation therapy, the outlook for these women is, sadly, often very grim. The quandary, however, is that a Pap smear is a very low-cost test that can detect cancer up to ten years before it happens. Even more, being screened just once can reduce the likelihood of having cancer 70% to 80%, and early detection can guarantee nearly a 100% chance for a cure.¹

 

 

 

As a passionate advocate for women’s health and disparities in cancer care, I was inspired to spend three and a half months speaking with low-income women diagnosed with cervical cancer at a hospital in Cape Town, South Africa—where a Pap smear is a luxury for most women. In South Africa, cervical cancer is the second most fatal cancer in women and is known particularly as a ‘killer of poor women,’ because those of low-income status are the least able to access this screening test.² South Africa’s unique history with Apartheid, race and socioeconomic status remain linked twenty years later, and the voices of these women remain largely unaccounted for. When I interviewed these women, it was very important to me to have them be the center of this research, and to understand how their own unique journey with cervical cancer—from the first symptoms to finally getting treatment—fit into the greater contexts of their lives and values. I found that a variety of factors contributed to the fact that these women appeared at the hospital too late, but that it mostly boiled down to the interaction between providers and patients.

 

 

We know that patients and providers don’t always speak the same way about illness and disease. For these women, many of whom were going to a hospital for the first time, when providers used words like biopsy, cervical cancer, or radiotherapy, it was a foreign language to them. Instead they described these experiences as “cutting a piece,” or “cancer on the mouth of the womb,” or “being put under a machine.” These are but a few examples of the communication disconnects that led providers to disregard their patients’ inner sense that something was wrong, which led to patients being denied care. Furthermore, some providers weren’t equipped to diagnose cervical cancer, instead mistaking it for an infection, and they repeatedly turned away their patients with antibiotics or pain tablets.

I used the stories of these women to create a set of recommendations for providers, and it turns out that getting these patient voices front and center worked! Recently, my recommendations were implemented by the Department of Health in the Western Cape Province at the same hospital I worked at. They are now preparing to run workshops for providers in the greater Cape Town area to more effectively train them not only on how to identify cervical cancer, but also how to speak with and teach their patients about cervical cancer in a way that makes sense to them.