I am an engaged and informed patient with multiple chronic conditions. I am a patient advocate and a health strategist, and I care deeply for the patient experience. I work in both for profit and non-profit organizations. So when someone talks to me or writes about patient centered care, collaborative care or health, relationship based or centered care, I listen intently and I read with scrutiny. Consider the recent BMJ essay on collaborative health.

Are all these different types of care—use whichever buzzword you like—the same? Yes. The conversation centers on three fundamental questions: Who really has control in the health system—the patient/family, the physician, health administration, or the insurance company? Why is it important to have patients involved? And, how should physicians, nurses, and other “owners” of care respond to a possible changing dynamic in medicine, health, and wellness?

Why are all the above buzzwords and ideas the same? They are all about a change in the power dynamic. In the US the insurance company and the “health system” have controlled my care for the majority of my 33 years as a chronic patient. I have received great care from physicians, nurses, social workers, music therapists (the list goes on) over the years. I have also interacted with bad providers. I have received treatments at places that clearly did not care about me; rather, they cared about their reputation and protocols of their “system.”

That dynamic has started to change. Before the advent of the internet and digital health, the system controlled the flow of information, coverage of care, and access to physicians. The “system” still controls much of that. The change has come in part because of digital health, but it is also due to change in the mindset of those needing care. Now I can push the “system” and “I can pull on the “system.” I have more access to information about health and wellness and a diagnosis and its associated prognosis. I can access a physician or care provider almost instantly.

Why is it important that the patient is involved? Simply put—for better outcomes. The patient should understand his/her care. While some patients are actively involved in their care, there are others who have difficulty navigating and understanding the healthcare system. We need to engage these patients in the system to improve the healthcare process and create a “patient centered” system.  This “patient centered” system can be successful if we have policy makers, doctors, hospital administrators, and PFACs (patient and family advisory councils) working together to understand and listen to patients’ needs and concerns by designing “patient centered” policies and systems. We must also train doctors to become patient advocates by engaging in active communication and listening with their patients. Perhaps the doctor’s Hippocratic Oath should be updated to include “First Understand Your Patient.”

So how do physicians, health systems, and insurance companies respond? Do they need to embrace this new dynamic? I believe that they risk going out of business if they do not. The “system” should not think of this as losing power, rather this is the democratization of care. Think of this as another lesson, continuing medical education. In school, physicians learnt to treat the symptoms, the disease. Now (if they have not before) they need to enhance communication skills and understand that the patient is a person. Other players in the “system” learnt the business side of care. I often find that nurses, social workers, and other therapists are the front lines of patient care. “Treat” the patient as if “treating” someone important in your life. The relationship is important. Bring patients to teach in medical education, get them involved in every part of the health “system.”

At the end of the day, I want a real partnership with those impacting my care. I know that I must be an active participant as well, and that the “system,” including advocates, owes the same type of treatment to patients who cannot speak out for themselves. I want a relationship with my insurance company, with my physicians, the nurse coordinators, tech companies that want access and control of my data—everyone. This relationship is as much about communication as it is about data sharing. Two words can make a big difference—LISTEN and UNDERSTAND. So physicians and other care stakeholders, get on board because there is no turning back. Free my data, and embrace the new relationship. My voice is here to stay.  

Michael Mittelman is the patient editor, The BMJ.

Editor’s note: An earlier version of this BMJ Opinion article referred to a recent BMJ essay as being about collaborative care rather than collaborative health. This has now been corrected.