Why healthcare providers must listen to the communities they serve

May 22, 2023
© Leah Flores / Stocksy United
© Leah Flores / Stocksy United

Monique Shaw's career is rooted in care, community, and systems change. For over 15 years, she's been dedicated to improving the American healthcare experience for women, with a focus on Black women, who are routinely poorly served by the healthcare system. For example, Black women in America are three times as likely to die from a pregnancy-related issue than white women. There are myriad factors that contribute to this: quality of care, implicit bias, structural racism in the healthcare system, underlying conditions, and more. Since she joined the Robert Wood Johnson Foundation as a program director in 2019, she has worked to transform systems, leverage philanthropic resources to help support that systems change, and worked to advance racial inequities in health.   

Before joining the Robert Wood Johnson Foundation, Shaw worked at the Philadelphia Department of Public Health and Philadelphia Coordinated Health Care, where she managed outreach and spread awareness. Shaw began her career in community-based health and social services organizations, and is also a trained doula. 

Shaw spoke to Where to Next about the inequities baked into the American healthcare system, looking to community-based organizations for answers, and what gives her hope.

Where to Next: From your perspective and your lived and work experience, what is wrong with the American health system as it relates to women and health outcomes for women?

Monique Shaw: There are quite a few things wrong [laughs]—we could stay talking at this high level forever. But I think where we see major problems is that healthcare is inaccessible. And when it is accessible, it is oftentimes not of good quality and the care isn't respectful, especially when we're talking about underserved populations and people that have been traditionally marginalized in our society. 

When those folks that are furthest from opportunity are seeking health care, it is very fragmented; it's expensive and unaffordable. And the quality of the care is just lacking. 

This is true of maternal health in particular: the United States is one of the most dangerous high income countries in the world in which to give birth. And the maternal health crisis disproportionately impacts people of color. We have an inequitable system where there is structural racism and discrimination in healthcare settings that is not often talked about, that isn't brought to light. There's just an overall lack of investments in maternal and child health and wellbeing. Those are some of the root causes that go back generations—way before the pandemic—that are really foundational to some of the dismal, poor, and disproportionate outcomes that we're seeing among women in the U.S.

How have you seen these cracks and biases in the healthcare system in your work over the years?

There are sometimes subtle and not so subtle ways in which this appears in healthcare settings. One that most people are starting to hear about is patients not being listened to. Their experiences, their symptoms, their knowledge of their own bodies is not being taken into account in the healthcare setting. 

There is a disregard for what people say that they want, what they say their issues are, and the type of care that they feel that they deserve—and that they do deserve. I have witnessed instances where birth plans and treatment plans that were co-designed with a birthing person and their support partners and family members have been completely ignored because it is inconvenient for a provider or it is what some might not feel is a “traditional” way of practice, or might cost more time or more money and resources. That type of disregard: sending folks home for issues that they're complaining about and sharing has resulted in people's deaths. 

There's this big component around the lack of attention and intention around the care that's provided. Patients are just being ignored.

You mentioned intention there and people's voices not being heard—whether it's from their GP or the attending nurse. How do you improve that? Is it training the nurses and the doctors better? Is it simply an education issue on the care side and on the provider side?

That's where we tend to focus when we hear about discrimination and mistreatment in healthcare settings. We tend to immediately think “if only we had implicit bias training that we can provide to healthcare providers.” But what we found is that just really doesn't work. That's insufficient. You can't train your way out of the biases you hold. 

We have to look at structural flaws within the system that promote inequities in care.

Could you give an example of what those flaws look like?

It can be something as simple as laboring on one's back. It is traditional within the healthcare setting. But it actually is not a promising practice for laboring for a lot of different birthing people. When you try to go into healthcare settings and change those sort of very common practices, it's startling to the providers. There are all these reasons as to why you can't do that—like monitoring the patient, for example. Well, mom wants to be able to move around and that's going to help her with her pain and laboring process. And if that means you have to come into the room 18 times to reconnect the monitor that's going to come off, then that's what we're going to do. 

There are practices and cultures within some hospital settings that really create tensions at times with people wanting to have choice. It doesn't honor peoples' rights, and a lot of times cultural humility is not practiced. 

How can that be improved upon? Is it government regulations? The American Medical Association? Working with more community-based health teams? Obviously, this has been ingrained in nurses and physicians. This is the way they were trained. 

The training of healthcare professionals in school is really critical. There are books that nurses are still being trained from that say that people of color have a higher pain tolerance. Those are really profound and racist ideals that people are learning in school as part of their curriculum that they then take into their practice. There is a lot that we have to do around training healthcare professionals, beyond just implicit bias.

There are also community health workers, doulas, midwives, and community-based support professionals that bring an important and holistic aspect of care to hospital settings. The more that we can integrate those practices, the better people will feel and more holistic support they will receive. Having an advocate in the hospital setting at a time when you're most vulnerable is also really critical to alleviate and mitigate some of those tensions that that people experience.

Shouldn't your doctor or PCP perform that role, in a perfect world?

Yes, everyone has a responsibility and a role to advance and promote equity within their scope of work. I do think that there's a lot of improvements that we have there. But I also know that the way in which the current healthcare system is designed, it doesn't make a lot of space, time, and resources for certain health care professionals to really do that work.

Do we need to restructure the care model then?

We do need to restructure the care model. We need to reimagine the entire system. What we don't often do is understand and take a really deep look at systems that are created outside of the current system in response to the current system not meeting people's needs. 

An example of this is community birth centers. These are systems of care created outside of the current healthcare system because we were no longer waiting for the healthcare system to provide. They're addressing needs in communities. There is an over-medicalization of childbirth, and not every birthing person needs to birth in a hospital setting. We need to understand what these community birth centers and community midwives are able to provide that people aren't able to get within the healthcare setting, make adjustments, and then integrate the care. 

You've spent your entire career working in this space, is there anything that gives you hope right now?

The leaders on the ground who are supporting and shepherding community-based solutions to all the issues we're seeing. What we know is that those most impacted by inequity actually understand the solutions to the problems that they're seeing and the challenges that they face.When we lean into those community-driven solutions and find ways to support them, that's when we begin to really see how to reimagine our healthcare system so that it can be more equitable and deliver higher quality and accessible care.

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