For over a decade, we have seen growing consideration of the patient’s views related to care delivery, research, medical-product development, and other aspects of our health ecosystem. This focus is often referred to as capturing the “patient voice” and emphasizes the need for the health care system to be patient-centered by engaging patients (and care partners and family members) and to listen to their perspectives on and experiences with an illness and/or treatments. Examples of current initiatives focused on the patient voice include the Food and Drug Administration’s Patient-Focused Drug Development Initiative and the Centers for Medicare & Medicaid Services’ Person and Family Engagement Strategic Plan. Overall, the goal is to improve the lives of patients and families – with “improvement” defined from the patient perspective. This emphasis is only expected to grow in the future.
To keep the current momentum building, the objective of this paper is to provide a high-level overview of what patient-centricity means and the value that listening to the patient voice can have for health care providers and researchers. We will provide some examples and suggestions on how a patient-centered approach can optimize the future of care and research in anesthesiology.
What does it really mean to be patient-centered and to listen to the patient voice?
The terms, patient-centered, patient voice, and patient engagement, are often misunderstood. To ground this conversation, definitions that can provide a common understanding are provided in Table 1.
Many health care stakeholders often say they “put the patient at the center of all they do.” This is a laudable philosophy but is not the same as taking a patient-centered approach. Being patient-centered requires meaningful engagement with patients to understand what it is like to walk in their shoes and live each day with their condition. It means understanding what is most important to them when it comes to the impacts a disease and its treatment have on their lives. These impacts include but are not limited to health outcomes; they include everything from symptoms to care partner and family stresses, financial burdens, and more. Care and research can be improved and better meet patient needs when providers understand which impacts patients and families report as most important, recognizing that what patients report as most important is often different from what clinicians might report as most important.
Capturing the patient voice through meaningful patient engagement
There is no single, ideal way to capture the patient voice. Meaningful patient engagement is needed but takes many forms and often requires multiple approaches to gain a comprehensive picture of the patient experience. To find the best ways to engage a targeted patient group, it is best to start by talking to at least a few patients to learn from them the best ways to find and engage them. Informal discussions with patients help provide direction, but are just a starting point. Seeking a representative and diverse group of the patients you want to target for the specific issue is also a consideration. Table 2 provides examples of engagement approaches. At the same time, we must acknowledge that these approaches to understanding patient needs based on disease, socioeconomic issues, and others do not necessarily reflect the most important goals for an individual patient.
Optimizing care and research
Taking a patient-centered approach can help clinicians and researchers better understand patients’ needs and goals to produce better results and more meaningful research findings. Some recommendations about how to achieve this patient-centered approach when constructing clinically focused research studies include:
Getting clinical research right – patient co-creation of the protocol
When planning a study, it is beneficial to engage patients to help design it. Patients can provide advice on endpoints that should be collected, how frequently patients are willing to come to study appointments, and extent and frequency of invasive testing they will tolerate. Protocol co-creation constitutes engagement that can speed recruitment, reduce study dropout rates, and ensure study endpoints are aimed at the right targets. It is important to note that simply enrolling patients as study subjects is not patient engagement.
Getting the language right – “pain” vs. “discomfort”
In the development of a treatment for a condition characterized by splenomegaly, patients were asked about their pain level. It was found that the treatment reduced spleen size but did not decrease pain. Upon further investigation, it was identified that patients did not describe their symptom as pain. Patients used the word “discomfort,” and said it was not “pain.” In subsequent studies, a close relationship was detected. Both spleen size and discomfort were reduced. Similar challenges arise when caring for any patient undergoing surgery and anesthesia. Anesthesiologists must focus on patient perspectives, related to our understanding of the implications of anesthetic management for patients undergoing specific surgical procedures, but also individual patient needs and goals of care.
ASA followed these recommendations through the creation and the testing of the Perioperative Surgical Home Patient Education Tool – a tool designed to empower patients to be their own advocate and navigator throughout their perioperative experience.
To develop this tool and study protocol, a multidisciplinary team of experts was convened that included representation from surgery, anesthesiology, nursing, and patient advocacy. This team was created to ensure that the patient voice was prioritized and present throughout the development and testing of this tool. After developing the first draft of the tool in both English and Spanish, ASA received IRB exemption to study the tool at five hospital sites across the country. The outcome of the testing protocol was that almost 75% of patients agreed that they were better prepared to have surgery and more empowered to communicate with their doctors and nurses.
The success of this tool is attributable to ensuring that the patient perspective was a part of the development and research process and ensuring that the language of the tool and the protocol of the study were going to be meaningful to surgical patients and their caregivers.
For those interested in gaining access to this important tool, please email firstname.lastname@example.org.
Future directions for patient-centricity
It is clear that the area of patient centricity is still nascent, but burgeoning. In 2019, the Patient-Centered Outcomes Research Institute, or PCORI, was reauthorized by Congress and its focus expanded, an indicator the U.S. government will continue to invest in amplifying the patient voice. With the growing emphasis on patient-centricity, it is critical that research, care delivery, medical-product development, and other aspects of the health ecosystem respond and change in a meaningful way.
The specialty of anesthesiology is not well understood by the public. Yet patients and their families must trust anesthesiologists at the most vulnerable periods of their care. We believe patient engagement and listening to the patient’s voice represent an opportunity for the specialty to lead in optimizing the future of the nation’s health care system.