By most counts, the United States is known for relatively good healthcare and medical science. But the US’s history of racial injustice casts a shadow. African-American women are 22% more likely to die from heart disease than white women in the United States and 71% more likely to die from cervical cancer. For breast cancer, the survival rate among white women between 2005 and 2011 was 91%, while for black women it was 80%.
This pattern extends to other areas of healthcare, too. African American mothers are two to three times more likely to die from pregnancy complications than white women (For more on maternal health disparities, see the articles on the use of doulas in Sweden and Dr. Brittany Chambers’s summary of her research, both later in this field guide).
The difference in mortality rates reflects disparities across the healthcare system. From education in the community and access to preventative care, to the quality of diagnostics as well as the level and quality of follow up care received, different groups have wildly different experiences.
There are a number of organisations working to open up access and improve healthcare for communities who have been underserved, as well as to educate providers on how to eliminate bias and close the outcomes gap. Here are two different approaches being taken to the issue, as well as some of the challenges that remain.
The local approach
One approach to tackling disparities in the healthcare system is to target areas where the problem is especially severe. This is the objective of Equal Hope (formerly the Metropolitan Chicago Breast Cancer Task Force) a non-profit that has been working to end the healthcare disparity in the Chicago area for over a decade.
Equal Hope takes a threefold approach to redressing the imbalance in healthcare experiences across its communities.
First, the organisation connects with its clients through education on the ground. Then, it links those who need extra support up with “navigators”, who help them make their way through the often bewildering process from diagnosis to aftercare. Finally, it works on policy advocacy.
This three-pronged approach helps cut across different aspects of the healthcare disparity problem. Education hopes to prevent a future generation of non-white women from receiving different care from white women. Navigators help women who are currently trying to access care within a fraught system and links them up with every available resource. Policy and advocacy work looks to change the shape of the system altogether, so that patients no longer require navigation, but receive the care they deserve.
Anna Forte, who works in research and policy at Equal Hope, explains that her aim is to translate the issues that the navigators report back from their work into advocacy to shift policy in the right direction. “The reason we’ve always had the policy arm is to make sure the changes that we help bring about are permanent.”
Most recently, that’s taken the form of lobbying for the state of Illinois to implement a state law mandating that all areas have a Breast Imaging Center of Excellence, which ensures the highest quality mammograms are available to all patients.
The Act also requires that all insurers and the state Medicaid program fund screenings for high risk women. But many of these mandates, despite being made law, have not been sufficiently implemented.
This work has been successful in closing the gap between different racial groups in the Chicago area: between 1999 and 2013, Chicago achieved a 20% decrease in the racial gap in breast cancer mortality. Equal Hope’s next mission will be to tackle another area of inequality: cervical cancer. It’s also launching a new program to help low-income women of colour form relationships with primary care doctors and health centres, after its research showed that 60% of its clients did not have a primary care doctor.
But what can be done about the seven other cities whose racial gaps either stagnated or grew in the same period? While its deep involvement in a particular community undoubtedly led to its success there, one limitation of Equal Hope’s approach is simply that there aren’t enough of them to reach all the women of colour throughout the U.S. cities in need of navigation, resources and advocacy.
Addressing international issues
While Equal Hope doubles down on the specific illnesses and access issues facing Chicago, another organisation called the Institute for Healthcare Improvement is trying to approach the problem across different regions and health systems.
Founded in the 1980s as a body dedicated to reducing waste and cost in healthcare while improving quality and outcomes, IHI now recognises equal access to care as a fundamental issue that it seeks to tackle across different healthcare networks.
Rather than focusing on a particular geographical area, IHI works with large scale organisations that cut across healthcare systems in various regions. When working on issues of inequality, their approach is to look at systemic, rather than individual factors.
“For me, a big focus of equity/anti-racism work is centred on expanding the conversation around things like racism and sexism to take a system view instead of any individual focused view”, says Alex Anderson, who heads up IHI’s Internal Equity team.
Rather than doubling down on individual behaviours and beliefs that may cause disparities in healthcare, Anderson focuses on “accepting that systems of oppression relate to our norms, processes, institutions and policies — all which were shaped over time.”
How does one go about reforming such a large, historical and embedded system? Like Equal Hope, IHI takes a multi-layered approach. Its work reaches healthcare professionals, staffers, practitioners and patients, as well as its own staff.
One initiative saw a group of physicians come together to discuss issues of race and equality in the exam room. The group put together a list of questions that doctors could use to open up a dialogue with their patients about race in order to quell any issues from the start and build trust in the relationships.
These questions included, “Many of my patients experience racism in their health care. Are there any experiences you would like to share with me?”and “I don’t want to assume anything about your identity. How do you identify racially, ethnically, culturally, and what are your pronouns?”
Beyond the exam room, IHI has worked to reverse sweeping health problems; one project helped to reduce unnecessary c-sections in Brazil, which had the highest rate in the world. After finding that many of these interventions had to do with an imbalanced power dynamic between doctors and patients, the Projeto Parto Adequado (PPA) increased the rate of vaginal birth from 21.6% to 38% over 18 months in 26 hospitals.
And in the US, IHI worked with The University of Arkansas for Medical Sciences in its efforts to raise the minimum wage for their workers, which represented a 3% and 4% increase to UAMS’s overall budget from the previous year, and as much as a 40% increase in wages for the lowest-paid employees in their system. This shows that disparities exist within the architecture of the health system, beyond the doctor-patient dynamic.
This varied work across regions and organisations helps to target areas of inequality throughout the world. But how possible is it to dismantle a comprehensive system of oppression by chipping away at various problem areas in isolation?
Indeed, while both are working across the gamut to reduce disparities in access and care, Equal Hope and IHI are aware that much of their work can feel like putting out fires: setting up smoke alarms for long term change is a much more difficult order.
For Equal Hope, working in particular neighbourhoods is the best place to start. Forte explains, “While a lot of factors can be controlled for, we’ve found that it ultimately comes down to place. There are just certain places in Chicago that do not have access to a high quality of care.”
But the more universal issues are the true culprit behind these neighbourhood problems. “There are still institutions such as healthcare that were not built to serve people of colour,” says Forte.
Anderson agrees. “The more we start to understand the ways that systems of oppression work, the easier it is to engage individuals who don’t see themselves as racist/sexist etc. in the necessary work to address the problem.”
This article was amended to correct a mistake in the extent of the increase in wages for low-paid employees in the UAMS system.