Tracy Steffek, Founder and Principal Consultant at Remedy and Root, LLC, shared a post on Substack:
“The Invisible Infrastructure of Cancer Care
When we talk about improving cancer care, we usually focus on what happens inside the health system. There are new treatments, better technology, more navigators, more screening, and more data. These are things that do matter.
But over time, both as a patient and through my experience in community organizations and public systems, I’ve seen that some of the most vital elements of cancer care happen outside the hospital. Support provided by community organizations should be viewed as a core part of cancer care, not just as peripheral assistance.
Like when a patient makes it to treatment because a non-profit or faith-based institution helped pay for gas. Or, when a single mother completes radiation, because a certified home provider watches her children after school. Or a survivor who stays engaged in follow-up care because a peer support group reminds them they aren’t alone. None of those things show up on any oncology flow sheet or care plan, yet they often determine whether care succeeds.
One thing I learned working in public health and community systems is that creating another program rarely solves fragmentation. Most communities already have organizations doing incredible work. The challenge is that patients are left trying to navigate them all on their own.
Health care often treats community organizations as optional resources or referrals, rather than as core elements of care. However, community organizations should be recognized as integral to the care delivery system itself, not just as gap-fillers.
Every day, community organizations provide transportation, financial assistance, housing support, peer connection, food access, caregiver support, and countless other services that help people remain engaged in treatment. They spend enormous amounts of time coordinating around systems that don’t always coordinate with one another.
Much of this work is invisible. It’s rarely reimbursed, measured, or integrated into operational planning, but when these supports fail to connect, patients feel it immediately. They don’t experience ‘clinical care’ and ‘supportive care’ as separate categories. They experience their life. For them, a transportation challenge isn’t separate from chemotherapy, financial stress isn’t separate from treatment adherence, and the lack of child care isn’t separate from attending appointments. These things are connected because patients’ lives are connected.
One of the biggest lessons cancer taught me is that surviving treatment and navigating life are not separate experiences. They’re happening at the same time. The future of cancer care isn’t just about discovering new therapies. It’s also about designing systems that recognize the realities of people’s lives and connecting the supports that already exist around them.
We’ve already built so many of the pieces. The next challenge is helping them work together because sometimes the difference between receiving care and falling through the cracks isn’t another program, but whether someone took responsibility for connecting the dots.”
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