Oncology Nursing Research: Moving Toward Equitable and Inclusive Science

One of the challenges for nurse scientists, particularly those of us educated in traditional academic models, is the question of how to make certain that our research addresses critical barriers to achieving health and healthcare equity. Traditional research inculcation taught us to focus on discrete, answerable questions, using an attainable sample given the financial and practical limitations inherent in research implementation. Although these techniques were part of an agreed-upon scientific method, the restrictions can lead to an answer to a circumscribed question but fail to articulate the broader issues inherent in designing and implementing human research that moves from inquiry to impact. Although our strong history in oncology nursing research includes a range of health concerns and responses to cancer, including biologic, socio-cultural, sex and gender, and, more recently, financial, I think that we, as oncology nurse scientists, agree that the focus of our research needs to more explicitly address pernicious aspects of health that lead to health disparities: racism and structural discrimination. Racism and structural barriers cloud all aspects of oncology: early detection, the design and uptake of promising therapeutics, quality of life, and financial well-being during active treatment and survivorship. How do we take the essential steps to not only measure but also address these critical barriers to reduce disparities and bring about more equitable and salubrious outcomes in oncology nursing research?

Perhaps some of us will need to reframe and further consider the positionality of ourselves as researchers in relationship to the research and include the concept of positionality in the conceptualization and design of all research, including quantitative and big data research. Using the techniques familiar to qualitative research, performing critical self-examination of our position in relation to the research is needed across the research spectrum. This focus is needed to embed a worldview that explicitly considers the variables known to affect cancer health outcomes, including racism and structural barriers. Expanding the range and types of factors researchers consider to strengthen the cultural responsiveness and inclusivity of their work may require leaving behind the seemingly neutral perspective of the scientist. This work to evaluate self in research has many parallels to examining implicit biases and other work to move toward understanding and enacting anti-racist behaviors (Tajima, 2021).

In addition, how do we skillfully integrate a range of social determinants of health, which perhaps should be considered contributors to health instead? A significant challenge going forward for researchers will be to consider the full spectrum of individual- and societal-level variables. Social determinants of health, although needed, are not enough. For example, the specification of demographic variables and the ways that they are measured must be addressed. Becoming clearer about the distinctions between race, ethnicity, and ancestry will require some further consideration about conceptualization and measurement and how to consider the contribution of these domains in research design. Developing reliable and valid measures of racism and racial inequities and the inclusion of high-risk variables, such as nativity and immigration status, which may be crucial to health status, need to be considered in future research designs and implementation (Payne-Sturges et al., 2021).

As we move forward, it is necessary to further embrace a perspective that not only considers, but also centers, social determinants of health in our work while advancing oncology nursing. Our researchers, authors, readers, and community members can work together to develop nursing science that addresses and integrates multiple domains of human health, with particular attention paid to the effects of social determinants of health across oncology nursing research domains. In addition to multiple articles in our current issue that focus on cultural issues and other social and structural domains, I am directing our readers to a two-part series that provides an update to the 2019–2022 ONS Research Agenda (Von Ah et al., 2019). The first article (Jones et al., 2021a) addresses the importance of broadening the oncology nursing framework. The second article (Jones et al., 2021b) addresses historical and current issues related to broadening the oncology nursing workforce to represent the diversity of the individuals and communities of the United States.

With the conclusive evidence that racism and social and structural determinants of health affect outcomes throughout the cancer trajectory, choosing to not incorporate social determinants of health is a choice, not a scientifically neutral stance. Further avoidance of racism can continue to obfuscate the role of racism in driving health inequities.

About the Author(s)

Debra Lyon, RN, PhD, FNP-BC, FAAN, is the executive associate dean and Kirbo Endowed Chair in the College of Nursing at the University of Florida in Gainesville. Lyon can be reached at ONFEditor@ons.org.