May Mallahzadeh ⏤ 2024
May Mallahzadeh ⏤ 2024
Toward patient-led innovation
Toward patient-led innovation
The healthcare system in the US currently operates under a fee-for-service model, where financial considerations play a central role, creating power imbalances. Individuals with various conditions rely on this system for reliable information, often delivered in a manner that prioritizes efficiency over personalized care. This can be especially challenging for individuals with rare diseases, as the specific information they need may not be extensively researched or deemed profitable for the healthcare system to explore or understand.
In this model, patients are often referred to as users of services, and terms such as "patient-centered" are used synonymously with consumerism. While patients may be asked for feedback to improve services, they are not necessarily at the center of the design process, nor are they actively engaged in decision-making or genuinely heard.
The concept of patient-centered care originated in the 1950s when US psychologist Carl Rogers emphasized the importance of building trust between therapists and patients to improve therapy outcomes. In the 1970s, George Engel expanded this concept to healthcare, and it was later enshrined as one of the ten core principles of the NHS in the 2000 NHS Plan. (Latimer et al., 2017) This approaches advocates for transparent information sharing with patients, allowing them to participate in care decisions alongside providers. However, our encounters with the healthcare system often reveal that patient-centered care is not consistently practiced in today's healthcare system.
In recent years, patient-centered care has gained more attention, which is a positive development for healthcare. It shifts the role of patients from passive recipients to active participants, promoting transparency and empowering them to ask questions and make decisions about their care. However, we still have a long way to go. It's concerning that in the current system, the role of patients is so minimal that the first step is simply to allow them to make their own decisions and, in cases like Long COVID, to be heard and validated.
But what are the next steps? Transitioning from patient-centered care to patient-centered design and, ultimately, to patient-led research and innovation.
Patient-Centered Design (PCD): Patient-centered design is a philosophy and approach that emphasizes the needs, preferences, and experiences of patients throughout the design and development of healthcare products, services, and systems. PCD prioritizes understanding patient needs and challenges. The goal of PCD is to create healthcare solutions that are not only effective but also user-friendly, accessible, and tailored to the specific needs of patients. This includes considering factors like health discrimination when designing and redesigning services and products within or outside the healthcare system.
Patient-driven Innovation and Research: Taking a step further, patient-driven innovation or research emphasizes the significant influence patients have on the direction of innovation or research. While patients may not necessarily lead the entire process, their needs and perspectives are central to shaping and informing the development of new solutions and/or research agendas. Their involvement and influence at this level are greater than in patient-centered design as they are involved and engaged in the process.
Patient-Led Innovation and/or Research: At the highest level, patient-led innovation or research highlights the active role patients play in initiating, designing, and driving the innovation process. Patients are seen as co-creators or leaders in developing new solutions, ensuring that the outcomes are truly reflective of their needs and experiences.
By progressing through these stages, we can move towards a healthcare system that genuinely values and incorporates the insights and leadership of patients, ultimately leading to more effective, inclusive, and patient-responsive healthcare solutions.
In my research, I focus on understanding the level of engagement and participation patients desire in healthcare delivery and decision-making. I aim to explore opportunities for enhancing collaboration among patients, providers, researchers, and the overall healthcare system. By asking patients about their preferences and expectations, I strive to identify ways to improve their involvement in healthcare processes and ensure their voices are heard and valued. This approach helps bridge gaps and fosters a more inclusive and effective healthcare environment for all stakeholders.
The healthcare system in the US currently operates under a fee-for-service model, where financial considerations play a central role, creating power imbalances. Individuals with various conditions rely on this system for reliable information, often delivered in a manner that prioritizes efficiency over personalized care. This can be especially challenging for individuals with rare diseases, as the specific information they need may not be extensively researched or deemed profitable for the healthcare system to explore or understand.
In this model, patients are often referred to as users of services, and terms such as "patient-centered" are used synonymously with consumerism. While patients may be asked for feedback to improve services, they are not necessarily at the center of the design process, nor are they actively engaged in decision-making or genuinely heard.
The concept of patient-centered care originated in the 1950s when US psychologist Carl Rogers emphasized the importance of building trust between therapists and patients to improve therapy outcomes. In the 1970s, George Engel expanded this concept to healthcare, and it was later enshrined as one of the ten core principles of the NHS in the 2000 NHS Plan. (Latimer et al., 2017) This approaches advocates for transparent information sharing with patients, allowing them to participate in care decisions alongside providers. However, our encounters with the healthcare system often reveal that patient-centered care is not consistently practiced in today's healthcare system.
In recent years, patient-centered care has gained more attention, which is a positive development for healthcare. It shifts the role of patients from passive recipients to active participants, promoting transparency and empowering them to ask questions and make decisions about their care. However, we still have a long way to go. It's concerning that in the current system, the role of patients is so minimal that the first step is simply to allow them to make their own decisions and, in cases like Long COVID, to be heard and validated.
But what are the next steps? Transitioning from patient-centered care to patient-centered design and, ultimately, to patient-led research and innovation.
Patient-Centered Design (PCD): Patient-centered design is a philosophy and approach that emphasizes the needs, preferences, and experiences of patients throughout the design and development of healthcare products, services, and systems. PCD prioritizes understanding patient needs and challenges. The goal of PCD is to create healthcare solutions that are not only effective but also user-friendly, accessible, and tailored to the specific needs of patients. This includes considering factors like health discrimination when designing and redesigning services and products within or outside the healthcare system.
Patient-driven Innovation and Research: Taking a step further, patient-driven innovation or research emphasizes the significant influence patients have on the direction of innovation or research. While patients may not necessarily lead the entire process, their needs and perspectives are central to shaping and informing the development of new solutions and/or research agendas. Their involvement and influence at this level are greater than in patient-centered design as they are involved and engaged in the process.
Patient-Led Innovation and/or Research: At the highest level, patient-led innovation or research highlights the active role patients play in initiating, designing, and driving the innovation process. Patients are seen as co-creators or leaders in developing new solutions, ensuring that the outcomes are truly reflective of their needs and experiences.
By progressing through these stages, we can move towards a healthcare system that genuinely values and incorporates the insights and leadership of patients, ultimately leading to more effective, inclusive, and patient-responsive healthcare solutions.
In my research, I focus on understanding the level of engagement and participation patients desire in healthcare delivery and decision-making. I aim to explore opportunities for enhancing collaboration among patients, providers, researchers, and the overall healthcare system. By asking patients about their preferences and expectations, I strive to identify ways to improve their involvement in healthcare processes and ensure their voices are heard and valued. This approach helps bridge gaps and fosters a more inclusive and effective healthcare environment for all stakeholders.
Since this research focuses on patients and providers as the primary groups impacted by healthcare decisions, it is essential to address a common misconception. Some argue that the healthcare system defaults to being physician-centered, which I disagree with. Given the rise of burnout and the decreasing desire to pursue provider roles, along with the growing need for physicians, I believe the system is not truly designed with providers at its center either.
Providers possess knowledge, power, and access to resources that connect patients with care, but they are not at the center of the system. They often lack the power to implement necessary changes and may not be able to perform their jobs as they wish due to existing limitations. As Vidiya Viswanathan, MD points out:
"Healthcare in America can make you feel like a cog in a system that is broken. The first step to changing a system is even allowing yourself to think of your own identity as someone who can change a system or create change. One of the contributors to burnout in residency and physicians in general is the lack of agency and the feeling that you can't create change."
Viswanathan shares her experience in the healthcare system, hoping her voice will be heard.
In conclusion, both patients and providers should be listened to and be more involved in creating changes. It is not a matter of who should be at the center or a battle between patients and providers. It is about allowing those with experience to tell us what needs to be changed and ensuring their voices are heard in shaping the future of healthcare.
Since this research focuses on patients and providers as the primary groups impacted by healthcare decisions, it is essential to address a common misconception. Some argue that the healthcare system defaults to being physician-centered, which I disagree with. Given the rise of burnout and the decreasing desire to pursue provider roles, along with the growing need for physicians, I believe the system is not truly designed with providers at its center either.
Providers possess knowledge, power, and access to resources that connect patients with care, but they are not at the center of the system. They often lack the power to implement necessary changes and may not be able to perform their jobs as they wish due to existing limitations. As Vidiya Viswanathan, MD points out:
"Healthcare in America can make you feel like a cog in a system that is broken. The first step to changing a system is even allowing yourself to think of your own identity as someone who can change a system or create change. One of the contributors to burnout in residency and physicians in general is the lack of agency and the feeling that you can't create change."
Viswanathan shares her experience in the healthcare system, hoping her voice will be heard.
In conclusion, both patients and providers should be listened to and be more involved in creating changes. It is not a matter of who should be at the center or a battle between patients and providers. It is about allowing those with experience to tell us what needs to be changed and ensuring their voices are heard in shaping the future of healthcare.