The Prepared Patient: Waiting for Top Down Change is a Luxury Patients Cannot Afford
Families who I cared for in the ER convinced me that waiting for top‑down changes in our health system is a luxury patients cannot afford. We can reclaim power now, before illness strikes and financial debt mounts. For those who have already been impacted, we can reduce the likelihood that similar incidents will occur again. This is why I wrote "The Prepared Patient: Your Guide to Surviving the Healthcare System" Our system is broken with millions of us incurring debt due to our health care. Many of us cannot afford health insurance. And only 11% of us are fully health literate. Changing the system from the top down will not happen any time soon but patients can increase the odds that they can survive it.
Why I Wrote This Book
The Families who I cared for in the ER convinced me that waiting for top‑down changes in our health system is a luxury patients cannot afford. We can reclaim power now, before illness strikes and financial debt mounts. For those who have already been impacted, we can reduce the likelihood that similar incidents will occur again. This is why I wrote "The Prepared Patient: Your Guide to Surviving the Healthcare System" Our system is broken with millions of us incurring debt due to our health care. Many of us cannot afford health insurance. And only 11% of us are fully health literate. Changing the system from the top down will not happen any time soon but patients can increase the odds that they can survive it.y Inspiration: Patients and their Families
At the start of my medical career, I met a mother accompanying her six-year-old daughter, the size of a toddler, who had entered the ER from triage. I was the attending physician in the pediatric emergency department of a major medical center. The little girl, who suffered from a condition that required highly specialized care, needed to be resuscitated. It was my job to lead the efforts to save her life.
Walking briskly alongside the child and her mother to the code room, our pace quickening, I learned that the mother had driven the child to the hospital. It seemed odd to bypass an ambulance given the child's urgent and special needs.
“You drove her here? Why didn’t you call 911?” I asked her as we rushed down the hallway, not realizing that her response would change the course of my life. “If I didn’t drive her, if I called 911, the mother said, the ambulance would have taken her to the nearest hospital, and she would be dead.” “Where do you live?” I asked. “About an hour from here. The teams at our local hospital aren’t equipped to treat her condition.”
This woman had driven her special needs child in need of urgent medical care straight to the Johns Hopkins Hospital because, as she would share with me later, there was a policy in place that could have put her daughter's chances of survival at further risk.
In the code room, lifesaving efforts happen fast. The team prepared to help the child breathe, put in IV lines, and take X-rays after we placed an endotracheal tube. To our relief, she started breathing. Minutes later, we discover that she had a perforated bowel. Once we completed her resuscitation, she was taken to the operating room. The surgeons took over, and after a short stay in the hospital, she would walk out the same doors she entered.
The girl’s mother, knowing that there was a policy in place that directed ambulances to go to the nearest hospital rather than the hospital that could provide her daughter with the best care, had saved her daughter's life.
After that experience, I vowed to help change policy to help more parents and children in these situations. Based on what the mother shared with me, I originally assumed that the issue stemmed from inadequate training of paramedics in the care of medically complex children. After receiving a federal grant to address the needs of special needs children in emergencies, I collaborated with an emergency nurse and paramedic to create an award-winning education program for pre-hospital emergency and hospital personnel across the mid-Atlantic.
I discovered a more pressing barrier beyond lack of training. Local emergency medical services (EMS) policies required ambulances to transport patients to the nearest hospital, which often lacked the specialized expertise and equipment needed for medically complex children. This policy forced some parents to take dangerous measures, like driving long distances to reach the children’s hospital. I began advocating for policy reform, leveraging my network to push EMS leadership for changes that would allow direct transport to children's hospitals.
The impacts of these efforts became clear months later, while working a shift in the ER. I resuscitated a critically ill child in severe respiratory distress whose father revealed she had a recurring chest tumor. After stabilizing her for surgery, she survived. During her admission, Betsy Smith, the nurse expert and program coordinator for our special needs initiative (and a real inspiration), was evaluating our new EMS prenotification program, Special Children’s Outreach and Prehospital Education or SCOPE, that integrated special needs alerts into EMS computer dispatch systems. Betsy spoke with the father, who tearfully shared that enrolling in the program likely saved his daughter's life—her EMS record read, “This is a special needs child. Go directly to Children’s Hospital.” When Betsy told him I was the doctor who created the program, I later spoke with him and saw firsthand the life-saving impact of policy change. That night, I realized I could make an even greater difference through policy work on the national level. Soon after, I was accepted into a federal policy fellowship and began my federal career where I had opportunities to shape live saving national policies.
I continued to see patients while working on health policy for the next 14 years before stepping away from clinical work just before the pandemic took off in early 2020. Even though I was no longer treating patients, my > 25 years on the frontlines would continue to inform my work.
Next Career Steps
“You know you love to see patients, Mom. Why don’t you go back and start practicing again?” my daughter recently asked me. I couldn’t find an easy answer, so I said, “I’m going to write a book instead.”
In the years after that little girl was rushed to the ER by her mother, I met many parents like her. I called them “White Binder Parents.” They held their children's lives in their hands–records of their medical history, specialists’ notes, and details about past ER visits. I listened to them not only because they were the child’s mother or father, but also because they were experts and advocates, ensuring their children received the care they needed without delay.
As a physician serving as a federal health policy leader, including a stint as a senior executive health appointee under the Biden-Harris Administration, I am aware of the significant problems and frustrations with our healthcare system. In nearly 30 years of practicing medicine, I have collaborated with thousands of heroic patients who have taken personal health into their own hands. From all angles, as a clinician, policy-maker, and researcher, I know how to navigate the system to get what patients need.
From birth, we are all patients at the mercy of a broken healthcare system—but with knowledge, preparation, and self-advocacy, we can reclaim control and become savvy investors in our health.
Challenges are experienced throughout our lifespans. At twenty-six, without prior education on how healthcare works, millions of young adults fall off their parents’ plans and, for the first time, must purchase their own health insurance. Some through their employers while others buy it through the federal marketplace (Obamacare). At the same time, Gen X and baby boomers approaching Medicare eligibility face difficult decisions regarding whether to choose Medicare Advantage plans or Medi-Gap plans. Sifting through brochures and countless websites, they struggle with enrollment.
If you have health insurance, as most Americans do, you have access to care, but with limits. You wait months to score an appointment with a new primary care doctor after discovering that your long-time family physician is no longer in-network or has now established a concierge practice with high annual fees that you can’t afford. Under your plan, you have to pay thousands of dollars from your pocket before your insurance covers your care. You may be one of many who become saddled with unexpected bills and high costs despite having “good” insurance coverage. If you are among the 50 percent of American adults with at least one chronic condition, accessing and navigating care is even more challenging. If you have not experienced any of these situations, someone close to you likely has.
Most people don’t anticipate being a victim of the healthcare system, and not everyone will face severe situations, but we are all at risk.
Now more than ever, patients must understand their healthcare coverage and how to get what they need from our healthcare system. The administrative and regulatory burdens on the system, providers, and especially patients has caused widespread dissatisfaction and disruption like never before.
Individuals need simple, action-based solutions, specifically education and guidance that will help them find clarity in the mayhem at the core of the system. This book is not tied to current policies. It is foundational and will remain relevant regardless of changes in the political landscape. It will enhance patient understanding when changes occur in the healthcare system. It will answer the question, How do I get the care I need without losing my health or becoming a victim of medical debt?
Knowledge and preparation shift the balance. The best teachers I have found are the parents of medically complex children who arrive armed with binders. Their example proves that anyone, regardless of their demographic, can beat the odds. Prepared patients ask sharp questions and refuse to accept a bureaucratic “no” for an answer. They are driven by the universal instinct to prolong life and protect family.
This book is my call to spread that preparedness. The Prepared Patient: Your Guide to Surviving the Healthcare System is not a treatise on health policy. Reforms are too slow to meet urgent needs. Instead, it is a step‑by‑step guide to beating the odds by choosing the right insurance, organizing medical records, communicating with providers, and avoiding financial ruin.
The Prepared Patient: Your Guide to Surviving the Healthcare System comes out in 2026 (Johns Hopkins University Press)