Patients See What Doctors Miss. It’s Time to Listen.

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Over a decade ago, as I was preparing to take a road trip from San Francisco to Los Angeles with a friend, I felt a familiar sensation of discomfort. My kidneys had failed many years ago when I was 28, so I was well acquainted with the sensation of having peritonitis, an abdominal tissue infection that affects dialysis patients. If left untreated, it can be fatal. I went straight to an emergency department. To my surprise, the test came back negative. The following morning, I still felt unwell, so I went to my dialysis unit for a second test. Again, negative.

That day, against my better judgment, we got in the car and drove south. Near Bakersfield, I knew I couldn’t keep going. My friend took me to the nearest hospital, where a positive peritonitis test finally confirmed what I knew. But to get the care I needed, I had to deal with multiple providers who believed the test result instead of the patient in front of them.

Trust runs two ways, and when a system gives it to patients, they give it back. Through kidney failure, dialysis, two transplants, and a diagnosis of multiple myeloma, my care has always been best when providers have seen me as someone to consult with — and who brings a valuable perspective — rather than a case to be managed.

Every patient has a unique lived experience. When a provider doesn’t acknowledge that, it can make you feel like you’re at odds with the system. You might feel unable to speak up. This happened to me before my multiple myeloma was diagnosed. I had been living for years with back spasms that providers couldn’t figure out. I once told a doctor it felt like I’d been shot. His response was to shut me down. “Have you ever been shot?” he asked mockingly.

I complained about my agonizing pain at a drop-in clinic. Although I didn’t ask for medication, the staff told me that without knowing the cause of the discomfort, they couldn’t give me pain drugs. I felt stereotyped and dismissed because I am a Black woman. I left the clinic in tears.

When Someone Finally Looked at the Whole Picture

I finally received a diagnosis when a nurse looked at my full history and intervened. She told the attending physician I needed to see a hematologist. When I did, the specialist didn’t need to run tests to know that it was multiple myeloma. They just needed to read my chart. When treatments for myeloma began, the back spasms stopped.

While I was relieved to have the diagnosis confirmed, I lived with frustration over the many missed opportunities to identify it earlier. My symptoms were always attributed to my kidneys. Doctors didn’t see the whole me, only the specific body parts they specialized in. When I finally found a primary care physician who looked at my overall experience without blinders or bias, my trust in the system soared.

It was almost upended again in 2013 when Zuckerberg San Francisco General Hospital announced plans to privatize the dialysis unit that provided me with lifesaving treatment multiple times a week. The deal involved moving the unit from the hospital’s main campus in the Mission District to Laguna Honda, which is two bus routes and a shuttle bus ride away from where I live. And worse, private ownership would mean poorer staff pay, increased employee turnover, and worse care.

While most Californians trust their doctors and nurses, only one-half trust hospitals and the overall health care system. Almost three-quarters of Californians trust the system more when care is easy to navigate and access.

Trust and Distrust in California’s Health Care System: A 2026 Statewide Survey

I went to City Hall with fellow patients and dialysis unit staff members to express our concerns about the impact of privatization. After hearing from us, the chief financial officer apologized, admitting he hadn’t considered the deal’s far-reaching effects on our lives. Before long, the city administration reversed the decision to sell and relocate the unit.

That was the day I learned patient voices can make a difference. Since then, I have continued to engage in patient activism, including with Patients4PrimaryCare (P4PC), the California Office of Health Care Affordability’s Investment and Payment Workgroup, and my health center’s patient advisory council. Joining the wider community of patient advocates has proved fulfilling. It helped me realize I am not alone and that I have power.

As a member of the Family Health Center’s Patient Advisory Council at Zuckerberg San Francisco General Hospital, I have seen what happens when patients are given a seat at the table. Beyond advising the clinic about accessibility, informational resources, and patient satisfaction, we also participate in the interview and selection process for incoming medical residents. The hiring committee takes patient feedback seriously, and our opinions ultimately affect the committee’s hiring decisions.

What Patients Notice That Doctors Miss

As patients, we keep an eye out for things physicians might overlook, such as bedside manner, partnership potential, equity across genders and backgrounds, and connection to the community. When the system trusts patients in this way, it genuinely improves the care and gives me optimism about the future. I have seen the dynamic shift from providers who say, “I’m the doctor, you do what I say,” to the new residents at my clinic who greet patients with, “This is your care. We’ll work together.”

My clinic’s approach shouldn’t be an exception — it should be standard practice. Making that a reality across all providers will take some creative thinking and policy incentives that compel the people in charge to pay attention. Unlike new equipment or a clinic renovation, incorporating patient perspectives requires little more than staff time. Every clinic and hospital in California could quickly make the decision to revamp their processes like this.

Most people don’t think of themselves as advocates.

I didn’t.

It took years before I understood that telling my story would make a difference. Now I know that the tools health care leaders need to build patient trust are right there, sitting in the waiting room.

Ask us what we’ve noticed. Put us on the committee. Have confidence in our judgment.

In return, you’ll earn our trust.