I monitor my blood pressure at home. When my readings ran high, I raised them with my hematology team at a clinic visit. The team said blood pressure fell outside their responsibility and suggested I contact my cardiologist. My cardiologist told me to call my family physician. My family physician’s office declined to book an appointment, said the problem was not theirs either, and pointed me back to my cardiologist.
I insisted on an appointment, and the office relented. My family physician prescribed the minimum dose of a blood pressure medication. At my next hematology visit, the team reviewed the prescription, judged the dose too low to be effective, and increased it.
Three clinical teams each saw a piece of the problem, and nobody owned it until I forced the issue. What I lacked was care organized around me.
I had access to every one of those teams, and by any access metric my story counts as a success. Access is necessary, and access is not sufficient. Access is a step toward an outcome, and we set the bar too low when we report the step as the result. Without coordination or accountability, I stayed on an ineffective dose until my next clinic visit. The five principles below begin where access ends.
The five principles
Each principle is a sentence a patient should be able to say truthfully. I doubt that many patients can say all five today.
Someone owns my care as a whole, and I can name them. Each specialist answers for one part of my care. One person, or one team, answers for all of it, including how the parts fit together. The owner hears about every new problem and tracks every referral until a receiving clinician accepts me.
I always know what happens next, by when, and who has it. My care pathway has defined steps, from referral through tests, consultation and treatment, and each step has a target time. When a step runs past its target, the person responsible receives an alert, and I learn who is acting on the delay. My care team and I see the same record of where I stand and what comes next.
My information travels without me or my caregiver carrying it. I should never repeat my history to a new specialist, chase a result between offices, or hand-carry a disc of images across town. Consent is my part. Moving the information is the job of the people who provide my care.
What I tell my care team is acknowledged and answered. I see what no clinician can see, from how a new medication feels to what changed at home this week. When I report a symptom, a reading or a worry, I expect either action or an explanation of why none is needed. A patient who is brushed off learns to stop reporting, and the people providing care lose information they cannot get anywhere else.
My providers resolve their disagreements with each other, and bring me in when the choice turns on my goals. During treatment for graft-versus-host disease after my second transplant, my hematology team stopped my statin. A few months later, my cardiologist asked why I was off the statin and put me back on it. I insisted that the cardiologist contact the hematology team and reach a joint decision. The owner of my care brings clinicians together as soon as one questions another’s treatment plan. I join when the outcome depends on what matters to me, and the conversation should never require my insistence.
The patient’s obligations
Readers dismiss a manifesto of demands alone. Patients carry obligations too, and the people who provide care owe a commitment in return for each one:
- I state my goals and update them as they change. My care team records them and shows me where they shaped a decision.
- I consent to my information following me. My care team moves it, so neither I nor my caregiver ever acts as courier.
- I report what my care team cannot see. My care team acknowledges every report and responds with action or an explanation.
- I make the choices that turn on my values, such as whether to accept a treatment and which side effects I will tolerate. My care team lays out the options, the evidence and the trade-offs in terms I can weigh.
- I name my caregiver and set what they may do. My care team extends these same commitments to my caregiver within that scope.
A caregiver is a distinct person with a distinct role, neither an extension of the patient nor an unpaid coordinator. Caregivers spend far more time with the patient than any clinician does, so they know what is normal for that patient and notice what has changed. Many also see through what the patient plays down in the exam room. Their reports deserve the same answer as the patient’s.
How are we doing?
Every line in the manifesto can be checked against a patient’s experience. Ask any patient whether they can name the person who owns their care, and whether they know what happens next and by when. The answers show how far we have to go.
Leave a Reply