How patient activation made it possible to thrive with kidney disease

Dave White felt helpless when he was diagnosed with kidney disease. But today, he’s thriving—and patient activation made it possible.
Clinical Patient Experience Value-Based Care

This article, written by patient advocate Dave White, originally appeared in The Health Care Blog on Nov. 27, 2023, and has been republished here with permission.

At Phreesia, we often talk about the power of patient activation and why supporting patients in taking a more active role in their care is so transformative. But nothing illustrates that power like a patient’s story—one told in their own words. Read on to learn how patient activation made it possible for Dave to thrive with kidney disease. 

It had been 10 years since I’d seen a doctor when I arrived at the Emergency Room at George Washington University Hospital in October 2009. I was able to climb the first flight of stairs, but after I froze on the second, they brought me in on a wheelchair. 

That was the first time I heard the dreaded words, “Your kidneys aren’t working.” I was put on dialysis immediately, and my life transformed into a series of tests and procedures. But even after three weeks at the hospital, it didn’t sink in that there was no cure. 

I checked most risk factors for kidney disease: I ate the wrong foods, smoked more than a pack of cigarettes a day, drank too much beer, and didn’t exercise much. But the biggest risk to my health was not getting regular check-ups. I didn’t think I needed them, or that I had a part to play in my own health. 

I hated going to dialysis three times a week. Since I could no longer work, the $20 cab fare each way was an expense my wife and I struggled to afford, so I skipped often. When a nurse warned me that if I missed three sessions in a row I would have to be dialyzed at the hospital, I decided this meant I could get away with one session a week. 

The care plan I received from my providers called me “non-compliant” seven times. I felt they had written me off as a lost cause and saw no point in working with them either. 

Finally, I was called into a meeting with six nurses, social workers, and clinic staff. When I said I skipped dialysis because money was tight, the charge nurse said, “We’re going to get you resources for transit and help you plan good meals.” 

I was shocked – I didn’t know how support services worked. The nurse continued “But you have to do your part or you’re not going to be around much longer.” 

No one had said this in such blunt terms before. I left the room, went home, looked at myself in the bathroom mirror, and said, “They’re right. You can do better. You have to do better.” 

Fourteen years later, I am lucky to be alive to see the Centers for Medicare and Medicaid Services (CMS) include measures that place the patient’s voice at the center of clinical care. CMS has recognized that supporting patient activation, building a person’s knowledge, skills, and confidence around managing their health, and addressing social needs is critical to helping people like me get the support we need to get and stay healthy. 

Getting support to take a more active role in my care made a difference, and will for other people living with kidney disease and a range of conditions as CMS includes the Patient Activation Measure and screening for social drivers of health (SDOH) in the 2024 Merit-based Incentive Payment System (MIPS) Physician Fee Schedule which was officially published on November 16. 

I began my journey as a person with kidney disease angry and in denial. But when I realized I could take charge of my health and ask for help, things started to change. 

Going to dialysis regularly wasn’t enough. I needed to know more about how to manage my condition when doctors and nurses weren’t around. My care team helped me read nutrition labels, so I could modify my diet to improve my kidney health. I quit smoking and started exercising: one push-up a day was all I could manage at first, but I kept going. 

Once I was healthy enough to return to work, I realized this was hard while going to dialysis during the day. I started asking questions and found out I could switch to doing nocturnal dialysis or doing dialysis at home. Around the same time, I started advocating for myself so I could get a transplant and got on the list at three centers. 

I was so proactive about managing my health, I can honestly say I didn’t spend a single day waiting for a kidney. It ultimately took four years to find a match and getting my transplant wasn’t easy, but when I heard the nurse say, “You can eat whatever you want now,” I began to feel like myself again.   

Treat the person, not the disease is a powerful axiom, but in my case and many others, it takes the patient and their doctors and nurses to make this work. Initially, my care team assumed I had resources to pay for healthy food, and transportation to dialysis, and I didn’t know I could get help. Only when the charge nurse asked me to do my part did I feel seen as a key player on my care team, as an equal rather than a patient being told what to do. 

Our healthcare system focuses on medicine, and issues like housing, transportation, and what’s going on at home are pushed to the periphery. But supporting activation in patients, giving them the training they need in their new role, and creating the opportunity for them to ask questions are critical to providing whole-person care. When people like me get off dialysis and get a transplant, it’s not only better for our quality of life, but also reduces healthcare costs.   

I went from feeling hopeless about my future to thriving as a person living with kidney disease. When people see me speaking, advising other people about how to advocate for better care, they can’t imagine me then. But I tell my story because many others are judged as “non-compliant,” hopeless cases. They deserve a chance to attain their optimal health no matter which stage they have reached in the patient journey. 

I’m optimistic that including patient activation and screening for SDOH as quality measures in MIPS will help engage more patients and open the door for them to ask for the resources they need to lead healthy and fulfilling lives.  

Dave White is a proofreader for an international law firm and self-described “Kidney Warrior” — a grateful kidney transplant recipient and an informed, engaged healthcare consumer and patient advocate.