I was recently appointed the Assistant Director of the Yale Cancer Center with the portfolio of Diversity/Disparities. While I’m not sure I’m the most qualified for this, it has gotten me thinking a lot about diversity, disparities, and what it means to achieve health equity. Too often, I think, we are plagued by narrow thinking … the impression that our only objective is to ensure minority accrual to clinical trials. It seems to me, however, that diversity is so much more. It is truly at the core of what we do, particularly as oncologists.
I was recently at a talk by Marc Nivet, Chief Diversity Officer for the AAMC, who defined diversity like this:
Diversity as a core value embodies inclusiveness, mutual respect, and multiple perspectives, and serves as a catalyst for change resulting in health equity. In this context, we are mindful of all aspects of human differences, such as socioeconomic status, race, ethnicity, language, nationality, sex, gender identity, sexual orientation, religion, geography, disability and age.
Today, “personalized medicine” is a buzzword in our circles, as we ponder the genetic and genomic differences that lead to varying predispositions to malignancy and tumor behavior. To me, however, this concept goes beyond the framework of tumor biology and targeted therapies. It encompasses an understanding of an individual’s personal context—their socioeconomic situation, racial and ethnic background, cultural beliefs, and family/community circumstance. The richness of this understanding allows us to focus on how to provide the best care to our patients, avoiding a cookie-cutter “one-size-fits-all” approach.
Our patients have different degrees of health literacy, and access to quality oncology services is not uniform amongst all populations. As we think about our global village (both at home and abroad), it becomes abundantly clear that while the world is shrinking with modern technology, disparities remain that separate the “haves” from the “have nots.” How we translate knowledge across borders to improve cancer control globally is needed, but perhaps more importantly, developing innovative means of improving care in low-resource settings is of critical concern. One only needs to hear stories of patients presenting routinely with fungating cancers and the dire lack of critical supplies (like running water) to understand how rampant poverty in low/middle-income countries is a significant barrier to achieving health equity across the globe. ASCO has done a lot in terms of trying to address some of these disparities with the work of its International Affairs Committee, but there is still much work that needs to be done.
The delivery of patient-centric care is predicated on an understanding and appreciation of the kaleidoscope of factors that make us different, and an ability to tailor therapy accordingly. This requires a broad view and an imperative to work in a participatory fashion with our patients and communities to understand the issues that are of importance to them. We need to reflect on our internal biases and rise above these to provide compassion and care to patients of varying backgrounds.
A few months ago, I had a transgender patient who had a clear distrust of the conventional medical system. I think she expected that people would treat her in a demeaning way since she was so overtly different … but as we talked about her locally advanced breast cancer, she came to understand that, to me, she was first and foremost a patient with cancer, and I was committed to helping her in any way I could—and I would do so in a non-judgmental fashion. She had been using vitamins and “detoxifying regimens” to shrink her cancer, and while she absolutely refused neoadjuvant chemotherapy, it was meaningful to me that she came to a point of embracing surgery as part of her naturopathic regimen to reduce her tumor burden. Perhaps more importantly, she felt that she had been heard. Sadly, at surgery, she was found to have a 9.4 cm invasive lobular carcinoma with 25/33 lymph nodes positive… as a breast surgical oncologist, I felt ill; and as a public health advocate, I wondered how we (as a society) could have done better, how we could have made her feel more welcome such that she might have sought screening or treatment before her disease had gotten so advanced.
Diversity is important—it’s what makes us all different, and provides color to the tapestry of human experience. But as we embrace diversity, we must be cognizant of disparities, and we must actively engage in breaking down barriers both within our borders and outside if we are ever to achieve health equity for all.