Abstract
Working as a physician, I believed that health care was patient focused and that patients were active participants in their own care. A few years ago, I started a lengthy and complex journey of my own as a patient, whereby I was awakened to the fact that the health-care system does not value the patient voice nor are they included in their care. I found myself having a unique perspective, whereby I understood health-care delivery from my work as a physician; but I also understood now the patient’s perspective in great detail. I know that the patient’s voice is an invaluable asset in health care. Knowing what I now know, I have begun giving presentations about the patient experience to health-care professionals. I developed the acronym ‘PATIENT,’ to educate health-care professionals with the necessary tools to help evolve health-care delivery to the patient-centered team approach.
Keywords
When I was training in medical school, the phrase ‘patient-centered care’ was used a lot. As I became a physician and worked in health care, I believed that the system was patient focused and that patients were active participants in their own care. A few years ago, I suffered serious injuries that started a lengthy and complex journey of my own as a patient. Not only did I have the patient experience, but I became a patient expert. In my role as the patient, I was awakened to the fact that the health-care system does not value the patient voice nor are they included in their care. My experience as a patient was such that care was done to me and not with me. I found myself having a unique perspective, whereby I understood health-care delivery from my work as a physician; and I also understood now the patient’s perspective in great detail and how valuable the patient voice is. I wondered where the discrepancy was between health-care delivery and the belief that ‘patient-centered care’ was at the forefront, versus the reality I discovered as a patient that they really have very little input into their care. Having been a patient, I now experienced both sides of health care. I know that the patient’s voice is an invaluable asset in health care and if done correctly can be a great tool whereby health-care professionals and patients benefit. Patients should be equal stakeholders in health care. Knowing what I now know, I have begun giving presentations about the patient voice and the value of patient engagement to health-care professionals. Through these talks, I have reflected on how to bridge the gap to allow for the patient voice to be a critical component of health-care delivery.
The evolution of health-care delivery has evolved positively in the last 50 years. Paternalistic medicine, which involved physician dominance with little patient autonomy, is for the most part, a practice of the past (1). Currently, the health-care system predominantly focuses on a multidisciplinary team approach. This is a good thing, since it brings many health-care professionals, each with their own expertise, together for improved patient care (2). Although the latter represents a positive paradigm shift, a multidisciplinary team approach still has 1 major flaw; the patient is not part of this multidisciplinary team. Patients are the essence and consumers of health-care delivery, for without patients, there would be no health care. So why then are we excluding them from the discussions, when in fact, patients are the center of health care? Furthermore, health-care professionals are medical experts in their respective field. Let us not forget, however, that patients are the experts of their own lives and their own needs (3). Quality in health care is best achieved by understanding the experiences and wisdom of patients (4). I have learned through experience that further evolution in health-care delivery is needed, whereby a patient-centered team approach is needed. A patient-centered team involves all the health-care professionals of our current multidisciplinary health-care team but with the addition of the patient themselves, where the patient’s voice and expertise assume the same value as all the other members of the health-care team. With patient and health-care professional voices carrying equal weight, a true partnership is formed.
A patient-centered team approach represents a journey, and it is not always clear to the health-care team or the patient how to get there, despite the fact that all involved may indeed have the same goal. Having gained a unique insight into both sides of the health-care system, my presentations have started to focus on how to give health-care professionals and patients the necessary tools to advance health-care delivery to the patient-centered team approach.
I developed the acronym ‘PATIENT’ to educate health-care professionals with the necessary tools to help evolve health-care delivery to the patient-centered team approach (Figure 1).
‘PATIENT’ acronym.
Ask the patient permission to engage them. This act of asking permission lets the patient know they are an important part of the discussion. The patient feels valued and respected.
Understanding what is important to each patient fosters meaningful discussions between health-care providers and their patients (5). What matters will vary from patient to patient, but the better health-care providers understand the answers to this question, the more positive an impact this will have not only on the patient experience but also allows for more positive outcomes of health-care staff and resources. A personal example was during my rehabilitation. Members of the health-care team wanted me to use an electric wheelchair, as it would allow me to go further sooner. I, on the other hand, having been physically active my entire life, wanted to exclusively use a manual wheelchair, although that limited the distance I could travel independently. Maintaining as much physical activity as possible mattered more to me than going a longer distance. When my health-care team understood what was most important to me, we were able to move forward with common goals.
Teach the patient about their illness or diagnosis. Encourage them to ask questions about their conditions so that they better understand what is happening. Look for opportunities to teach self-management to the patients. For example, educating patients on the medications they are taking, why they are taking them, and how and when they should be taking their medications. Ask the patient to teach back what they were told to ensure they understand.
Health-care professionals have a responsibility to invite patients to be part of their care team. Patients are in fact the one constant that is present through every part of their journey as a patient, from start to finish. It only makes sense that they feel included and heard in the discussions about their care. Every patient will be different in terms of how involved they want to be, but regardless of the degree to which they chose to be involved, they have been given that choice and decided it for themselves.
Patient empowerment is achieved by giving the patient quality information and creating an environment, where the patient feels safe to ask questions. When patients feel empowered, they assume shared responsibility for the management of their conditions. Empowered patients want to be part of the solution. Wanting to be part of the solution yields optimal compliance, better outcomes, and improved motivation (6). Empowered patients feel powerful, not powerless, in the management of their care.
Noticing and interpreting patient data involve active listening, with the goal of trying to understand what the patient is conveying to you. Interpreting patient data does not only involve what the patient is saying to you, but it often involves what the patient is not saying to you and how they are behaving. For example, a sudden change in a patient’s behavior, anxiety, anger, frustration, and crying are cues to the health-care providers to try and decipher these data more thoroughly. Interpreting patient data also involves being aware of a propensity toward unconscious bias.
The simple act of talking with patients humanizes them. They feel like a person, not their diagnosis or just another patient. The more a patient feels comfortable, the more willing they will be to offer up helpful information. The more you know about a patient, the easier it will be to know how to best care for them. As a patient, I felt like I had lost my identity within a chaotic hospital environment; I was just a diagnosis. When the health-care team was rounding on me, addressing me by my name, although a small gesture, did not go unnoticed and made me feel like a person again.
In a chaotic, resource-strained, and stressful health-care system, it can be easy to exclude the patient from the conversation. But let us remember the patient can offer the system information that health-care providers can’t. And that is why patient engagement is important. There is tremendous value in listening to the patient voice. As health-care delivery evolves and hopefully shifts toward a patient-centered team approach, if you find yourself struggling with how to do this, remember the ‘PATIENT,’ and it will always lead you in the right direction.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.