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Community and Patient Leadership

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Many leaders noted that to effectively dismantle systemic racism, it will take leadership from both health systems and communities. More organizing, activism, and advocacy from outside the healthcare sector will be needed to shift power, voice, and decision-making into communities. 

“For clinicians—it’s hard for them to be in the trenches and then ask them to change the trench around them,” a community-based leader said. “Change needs to come from another direction.” 

Many people discussed some form of community-driven decisionmaking. A senior leader within a healthcare system said, “The locus of control and power center needs to shift, particularly when it comes to issues around governance and decision-making within our institutions. We need to quickly change those levers and incentivize power-sharing with the communities that have been harmed. We need to anchor [ourselves] in community wisdom in a deliberate way in which the value of that expertise is not measured in thank you cards and lunches, but in actual strategic decision-making around resource allocations.” 

Another asked, “How do you use the community power that exists to wrestle back some control from those larger healthcare systems, whether that’s in participatory grantmaking or public benefit dollars or policy? The community needs to exercise its muscles around what’s important.”

Patient advocates, as well as those who advocate on their behalf, have a unique form of influence that, when supported and amplified, can be a powerful force for change. One advocate said, “Of the people, for the people, and by the people has been successful. We must deliver the message that the patient is an equal partner in their relationships with doctors and the entire system.” Unfortunately, the tendency in health systems is to dismiss and marginalize the voices and needs of BIPOC patients and other marginalized identities.

Another community leader noted that closer relationships are what “keeps you accountable to a larger community and keeps you from throwing people away, dismissing folks for their opinions, and keeps you engaging with folks in the work. It doesn’t always mean playing nice. You’re challenging systems that are led by folks that you sit next to in church, or whose kids play soccer with yours, or see in the grocery store.”

Deeper relationships with community members can shift the thinking of health leaders toward addressing neighborhood conditions that are a driver of health disparities. “We decided to focus on those interventions that that the community said were important to their health,” one leader said. “One of the early interventions was affordable quality housing, which came from community meetings where the biggest complaint was rats and trash.”

To equitably engage community members, health leaders must recognize and address power dynamics, including the burden placed on community members asked to contribute their time and ideas without being compensated.

“You have to look at the power differential, the fact that some of the folks at the table are being paid six-figure salaries to be at that table and other folks are coming as volunteers, or you’re asking them to come as volunteers,” a community leader said. “It means paying them [for their time] and providing things like economic harm offsets and things that folks, no matter their documentation status, can avail themselves of in the process and ease the burden.”

These are the views of health leaders who participated in an 8-month project to analyze structural racism across the U.S. health system and provide recommendations for the collective leadership required to dismantle it.