Across the nation, health care systems are grappling with how to effectively confront health disparities and challenge the institutional bias and racism that drive inequities. This is particularly critical in improving care and outcomes for people with cancer.
As a first step, health care systems can meaningfully partner with community organizations to uncover the blind spots, or barriers to quality care and outcomes at the system and provider levels. Strategies to address these gaps should be developed and conducted in partnership with community members, especially people of color. Doing so helps to ensure that all parties effectively co-identify barriers and co-develop and co-conduct solutions to dispel these disparities. Without thoughtful community partnerships, efforts made by health care systems to address inequities in cancer care will only continue to perpetuate disparities in care for communities of color.
Without thoughtful community partnerships, efforts made by health care systems to address inequities in cancer care will only continue to perpetuate disparities in care for communities of color.
The Center for Health Care Strategies (CHCS) recently spoke with Jamil Rivers, founder and CEO of The Chrysalis Initiative and Evelyn Robles-Rodriguez, director of outreach, prevention, and survivorship at MD Anderson Cancer Center at Cooper-Camden, to understand how they have partnered to reduce disparities and address inequities for Black women seeking care for breast cancer in Camden, New Jersey. Both Ms. Rivers and Ms. Robles-Rodriguez participate in Co-Creating Solutions to Address Racism and Disparities in Oncology, a national initiative led by CHCS and made possible through support from Genentech, a member of the Roche group.
Q. What motivates you both to engage in this work?
Jamil: I was diagnosed with metastatic breast cancer in 2018 and was shocked to learn that Black women were dying from breast cancer at a 40 percent higher rate than white women. As I sought out the best care for myself, I found that there were already solutions in the breast cancer landscape when it came to social determinants of health and resources for under-resourced communities, but no one was dealing with the racism or bias within the care setting. I started The Chrysalis Initiative from my experiences offering guidance to women on how to best manage the experience of breast cancer and secure the best care for themselves.
Evelyn: I have been working for Cooper University Health Care in Camden, New Jersey since 1996, addressing the disparate care that women of color in our community often encounter. When I met with Jamil and understood the work The Chrysalis Initiative was doing, my first thought was, we have to work together. Through our current project, MD Anderson Cancer Center at Cooper-Camden wants to ensure that an equity assessment for our institution helps us understand and address any biases that may impede any of our patients receiving equitable breast cancer care, especially for women of color.
Q. Jamil, as the leader of a community-based organization, how do you partner with health care systems to identify and address disparities in care?
Jamil: We start with an equity assessment based on the National Comprehensive Cancer Network guidance, the National Cancer Institute standards of care, and other genetic, genomic, and radiology standards. We look at 40 areas using these various benchmarks, including provider touch points with patients — as well as evaluation of medical record data and everything else that’s going to help us identify where racism and bias can creep into services and procedures. We then build on that data with patient focus groups, interviews with staff, and chart reviews to identify potential variances between racial groups.
There is a lack of understanding and acknowledgement overall of how discrimination, bias, and racism — explicit or implicit — can nevertheless sneak in or rear its head and affect a patient’s care.
We come in as a partner to help reveal the health care system’s gaps in racial equity. I think most health care systems that we work with are aware of the impact of social determinants of health on health care experiences and outcomes. They have every intention to make sure that each patient who they interact with and provide care for is receiving care equitably. But, there is a lack of understanding and acknowledgement overall of how discrimination, bias, and racism — explicit or implicit — can nevertheless sneak in or rear its head and affect a patient’s care. Even just one person harboring bias can have the autonomy to impact the care of many patients, resulting in adverse outcomes. The process with every health network and hospital can be a little different and a bit bureaucratic, but we conduct the effort so that we’re not creating additional burden or more work for the staff but finding a way to integrate into the systems in place.
Q. Evelyn, how has having a community partner to drive this work and offer solutions benefited the health system?
Evelyn: When you consider undergoing an equity assessment, your concern is for what might be discovered. However, we cannot make positive steps forward without understanding what is preventing us from taking those steps. A community partner is essential to understand any structural, systemic, or provider biases that generate barriers to equitable care, because that collaboration ensures that the equity assessment is as free of internal biases as possible. In an era where many of us have diverse, demanding roles, the community partner also drives and guides us to get things completed in a timely manner. We look forward to having The Chrysalis Initiative review our equity assessment results with us, and be a further partner in helping us formulate ideas and resolutions to any institutional impediments to equitable care.
Q. Data can be an opportunity and a challenge when developing partnerships between health systems and community-based organizations. Can you share your experiences with data sharing in your partnership?
Jamil: Because we’re so data driven, we’re able to home in on where those disparities lie and give organizations the tools they need to address these areas. To help the process, we have a set of standardized forms, including memorandums of understanding and data-sharing agreements that we sign with our health care system partner to clarify expectations.
As a community partner, we have also found that it’s helpful to have an equity champion within each health system who is experienced in this space, can move the data sharing forward, and understands how to put forth solutions to address disparities.
Evelyn: At the institutional level, several steps need to be taken to proceed with a partnership of this sensitivity. First, you must find a champion at the leadership level who understands and supports the work to be done. That leader can help gain commitment for the work at the top level. A memorandum of understanding must then be reviewed to ensure that both sides have clarity on the work and fully agree to it — and that a confidentiality clause is in place. A data-sharing agreement is a must, as the data that is exchanged includes de-identified sensitive patient information. Finally, your champion needs to also ensure that staff who will participate in the personnel interviews understand the importance of the assessment and feel comfortable being honest during their interviews.
Q. Jamil, how do you approach conversations with health systems when the results of your equity assessments have revealed potential bias and racism?
Jamil: Once we identify where the disparities are, we get together with the patients, providers, and leaders at the health care system to present the findings, unpack them, and discuss impacts of substandard care. Then we lay it out as an opportunity to resolve the issue, provide our recommendations to improve in these areas, and track any changes in care experiences and outcomes.
Even though it may not be overt racism, it often results in Black female cancer patients receiving substandard care because this bias has now been repeatedly overlooked, co-opted, or even sanctioned in the health care system.
We understand that many providers have the best intentions for patients. But a lot of times we’re passionate, we’re busy, we’re doing our jobs and there’s a lot going on, and these things can be overlooked and can be impacted by bias. And we do find that when we demonstrate shortcomings in care of women of color, there can be pushback. We’ve heard white practitioners say, “Oh, well, it’s circumstantial,” or “that’s not racism.”
Even though it may not be overt racism, it often results in Black female cancer patients receiving substandard care because this bias has now been repeatedly overlooked, co-opted, or even sanctioned in the health care system. That’s what must be addressed and corrected.
Often, the staff already has a sense of the bad actors, or which providers or other colleagues are negligent or just oblivious to double standards in care. So, when we come in saying, “Hey, this is a problem area,” they may already have some level of awareness. Many times, it’s the internal culture that is potentially penalizing the staff if they were to escalate this to be an issue or that is fostering spaces where people function as gatekeepers and end up being barriers to ensuring equivalent care. This is often an eye-opening process for our partners, especially with regards how much wiggle room there is for bias to enter and result in substandard care. The trend that we’ve identified is death by paper cut. It’s often not anything overt. It’s just little incompletions and things that are omitted in the continuum of care that then add up and result in adverse outcomes for Black and Brown women. The good news is that all our work to date with provider and patient interventions has demonstrated dramatic improvements in care, patient experience, and outcomes.