The system asks people to coordinate information, decisions, and next steps while they may be sick, worried, or caring for someone else.
You can lead a team, manage a household budget, and understand complex issues at work, yet feel completely lost when struggling to schedule a specialist appointment or make sense of a medical bill.
I hear versions of this frustration whenever people discuss their health care experiences. Education and professional success do not automatically prepare anyone for a system with its own language, rules, and fragmentation.
As a physician and health system leader, I believe we need to understand what makes navigation so difficult. When we recognize the barriers, we can ask better questions and make the next step easier.
Health care is spread across many different sites
Think about what can happen after a primary care visit. You may be referred to a specialist, sent for imaging, directed to a separate lab, or told to call your insurer. Each office may have a different scheduling system, patient portal, billing process, and set of instructions. You may wonder, do these people talk to each other? Where can I access all of my information in one place?
Additionally, it’s the patient or family member who is expected to complete these tasks and put it all together. A referral might require a phone call. Test results might arrive before anyone explains what they mean. A bill may arrive weeks after the appointment. Every transition creates another opportunity for confusion or delay.
So much jargon
Terms such as “prior authorization,” “coinsurance,” “in network,” and “medical necessity” have specific meanings in the insurance world. Clinical language introduces another set of terms to learn. Even when each explanation is accurate, people may still leave without knowing what to do next.
Now add the stress of a possible diagnosis, a child in pain, or an aging parent who needs help. A person may be making decisions while tired, frightened, or rushing between work and caregiving responsibilities. The ability to absorb unfamiliar information changes under those conditions.
No single person is tracking the whole picture
A primary care clinician may know your medical history. A specialist may focus on a single condition. A hospital team may see you during a brief admission. An insurer reviews coverage under its own rules. Each plays an important role, but communication among these parts of the system can be imperfect.
That fragmentation forces patients and caregivers to be the link between professionals and organizations. They carry medication lists, repeat histories over and over again, follow up on results, and clarify who is responsible for the next appointment.
Four habits that help patients regain their bearings
1. Keep a short, current health summary. Include your major medical conditions, medications, allergies, surgeries, and your clinicians' names. A one-page summary is often easier to use than searching through several portals while sitting in an exam room.
2. End each appointment with four questions. “What happens next?” “Who will arrange it?” “When should I expect to hear something?” “Who do I call if I do not?” Write down the answers before you leave. This turns a vague instruction into an actionable plan.
3. Ask for explanations you can use. Try saying, “Could you explain that in everyday language?” or “Let me repeat the plan to make sure I have it right.” You can also ask for written instructions, especially for medications, tests, or follow-up visits.
4. Bring another person when the conversation matters. A trusted friend or family member can take notes, remember questions, and help track next steps. Ask the clinic in advance about bringing someone in person or including them by phone. You can also designate one family contact to coordinate information when several people are involved.
The responsibility for clarity belongs to the whole system
Health care organizations should provide clear instructions, reliable follow-up, and easier ways for people to get answers. Patients deserve clear communication from every part of their care team. In the meantime, small organizational habits can help families navigate a complex landscape.
This is why I wrote The Prepared Patient. I want people to feel more confident asking questions, following up, and speaking up for themselves or someone they love.
Which part of navigating health care has been unexpectedly difficult for you or your family? Your experience may help someone else recognize a problem sooner.
About the author Terry Adirim, MD, MPH, is a physician and the author of The Prepared Patient: Your Guide to Surviving the Health Care System (Johns Hopkins University Press, 2026).
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