Presentation
A Systems Engineering Approach to Meaningful Patient and Family Engagement in Safety Research
DescriptionPanel Overview: This panel presentation will explore innovative approaches to patient-partnered research, focusing on how meaningful engagement of patients can lead to improved health outcomes. Using a sociotechnical systems (STS) approach grounded in the Systems Engineering Initiative for Patient Safety (SEIPS) 2.0 model, we examine how engagement strategies can be optimized to advance equitable and patient-centered research. Our work challenges traditional models of patient engagement in healthcare improvement, calling for deeper, collaborative partnerships that integrate patient perspectives at all stages of the research process. By evaluating engagement methods through structured frameworks, we aim to create scalable solutions that foster inclusivity and reduce health disparities, especially for marginalized populations. This panel session will bring together experts in patient safety, health equity, systems engineering, and patient partners to share insights and discuss practical solutions for overcoming barriers to meaningful patient engagement.
By framing patient engagement within a systems engineering context, this panel will provide attendees with a comprehensive understanding of how to design research systems that promote equitable, patient-centered care. Attendees will leave with practical tools and strategies for implementing structured engagement methods that can be scaled and adapted to different research settings. Ultimately, our goal is to advance the science of patient engagement, creating research systems that not only include patients but create the structures, processes, and tools to empower them to drive the research process and improve health outcomes.
Research Background: The need for patient engagement in research is widely acknowledged, but the mechanisms through which engagement leads to better health outcomes remain unclear. Current research points to the prevalence of diagnostic errors and their disproportionate impact on marginalized communities, yet little is known about how engaging patients in research can influence diagnostic equity. Our central research questions are: (1) What specific aspects of research engagement contribute to improved health outcomes? (2) How can these methods be replicated across diverse contexts? (3) What real-time data collection methods can be used to assess the effectiveness of engagement approaches? To answer these questions, we apply a systems engineering lens to patient engagement, using the SEIPS 2.0 model to analyze the complex interactions between patients, researchers, and clinicians within the research work system.
Objectives and Significance: The primary goal of this panel is to highlight how patient engagement, when approached through a systems engineering framework, can lead to meaningful changes in research outcomes, particularly in the context of health equity. Our work addresses a critical gap by focusing on the intersection of patient engagement, systems design, and equitable healthcare outcomes. We aim to provide the audience with evidence-based insights into the structures and processes necessary for meaningful engagement, moving beyond tokenistic involvement toward collaborative, codesigned research models that center on the lived experiences of patients. Our panel will discuss three patient-centered frameworks to guide the development, implementation, and evaluation of structured engagement methods: the SEIPS 2.0 model, the Power and Control Wheel, and the Patient and Family Engagement (PFE) Framework. By applying the SEIPS 2.0 model, we investigate the interactions between patients and researchers as they navigate the research system, focusing on how collaboration evolves throughout different phases of research aimed at advancing high-quality care. The Power and Control Wheel helps us examine power dynamics within the patient-researcher relationship, identifying processes that allow for more equitable sharing of decision-making authority. Finally, the PFE Framework guides us in structuring engagement practices that foster trust and ensure patients are true partners in shaping research processes and outcomes.
One of the key insights from our work is the realization that while patient engagement methods can produce positive outcomes, they are not universally effective. Engagement must be tailored to the specific context, population, and research goal. For example, we found that patient-clinician dyad-led codesign sessions produced the highest levels of trust and shared decision-making, while patient-only sessions allowed for more candid discussions about barriers to care but lacked the actionable insights that come from clinician involvement. Our panel will delve into these nuances, providing practical recommendations for how engagement strategies can be adapted to meet the needs of different research contexts.
A major focus of this panel will be on how to ensure that engagement methods are inclusive of historically marginalized populations. Health equity experts on the panel will share their insights into how engagement can be structured to account for the social, economic, and environmental factors that often shape patient experiences but are underrepresented in research. We will discuss strategies for overcoming power imbalances between patients and researchers and ensuring that patients’ voices are meaningfully integrated into the research process. As we consider the challenges of PFE, we must also address the role of the EHR in reinforcing biases that can undermine inclusive patient engagement. This includes addressing the potential for EHR data to perpetuate biases and developing new methods for capturing patient-reported outcomes that better reflect the lived experiences of marginalized patients.
Panel Structure and Key Insights: The panel will consist of researchers, clinicians, and patient-partners who have been directly involved in the design and implementation of this study. Each panelist will provide a unique perspective on how systems engineering principles can be applied to optimize patient engagement in research. The session will begin with an introduction to the SEIPS 2.0 model and how it has been adapted to study patient engagement in codesign. This will be followed by a discussion of our preliminary findings, focusing on the challenges of data quality and accessibility within the EHR and how these challenges affect engagement.
Case Study Example: As an example of how patient engagement can improve health outcomes, we present the case of a middle-aged Black man struggling with hypertension and diabetes joined a codesign session on designing and implementing a text-message-based blood pressure monitoring. Initially skeptical, the man diligently participated in our three-week codesign and evaluation efforts. To his amazement, the simple act of engaging with the codesign efforts and later with testing the intervention (daily text messages) led to a 22-pound weight loss and blood pressure control for the next five-months. And furthermore, given his lifestyle changes, his diabetes is in control and he is off insulin. Both the patient and their primary care doctor credit his engagement in research for this positive health outcome.
By framing patient engagement within a systems engineering context, this panel will provide attendees with a comprehensive understanding of how to design research systems that promote equitable, patient-centered care. Attendees will leave with practical tools and strategies for implementing structured engagement methods that can be scaled and adapted to different research settings. Ultimately, our goal is to advance the science of patient engagement, creating research systems that not only include patients but create the structures, processes, and tools to empower them to drive the research process and improve health outcomes.
Research Background: The need for patient engagement in research is widely acknowledged, but the mechanisms through which engagement leads to better health outcomes remain unclear. Current research points to the prevalence of diagnostic errors and their disproportionate impact on marginalized communities, yet little is known about how engaging patients in research can influence diagnostic equity. Our central research questions are: (1) What specific aspects of research engagement contribute to improved health outcomes? (2) How can these methods be replicated across diverse contexts? (3) What real-time data collection methods can be used to assess the effectiveness of engagement approaches? To answer these questions, we apply a systems engineering lens to patient engagement, using the SEIPS 2.0 model to analyze the complex interactions between patients, researchers, and clinicians within the research work system.
Objectives and Significance: The primary goal of this panel is to highlight how patient engagement, when approached through a systems engineering framework, can lead to meaningful changes in research outcomes, particularly in the context of health equity. Our work addresses a critical gap by focusing on the intersection of patient engagement, systems design, and equitable healthcare outcomes. We aim to provide the audience with evidence-based insights into the structures and processes necessary for meaningful engagement, moving beyond tokenistic involvement toward collaborative, codesigned research models that center on the lived experiences of patients. Our panel will discuss three patient-centered frameworks to guide the development, implementation, and evaluation of structured engagement methods: the SEIPS 2.0 model, the Power and Control Wheel, and the Patient and Family Engagement (PFE) Framework. By applying the SEIPS 2.0 model, we investigate the interactions between patients and researchers as they navigate the research system, focusing on how collaboration evolves throughout different phases of research aimed at advancing high-quality care. The Power and Control Wheel helps us examine power dynamics within the patient-researcher relationship, identifying processes that allow for more equitable sharing of decision-making authority. Finally, the PFE Framework guides us in structuring engagement practices that foster trust and ensure patients are true partners in shaping research processes and outcomes.
One of the key insights from our work is the realization that while patient engagement methods can produce positive outcomes, they are not universally effective. Engagement must be tailored to the specific context, population, and research goal. For example, we found that patient-clinician dyad-led codesign sessions produced the highest levels of trust and shared decision-making, while patient-only sessions allowed for more candid discussions about barriers to care but lacked the actionable insights that come from clinician involvement. Our panel will delve into these nuances, providing practical recommendations for how engagement strategies can be adapted to meet the needs of different research contexts.
A major focus of this panel will be on how to ensure that engagement methods are inclusive of historically marginalized populations. Health equity experts on the panel will share their insights into how engagement can be structured to account for the social, economic, and environmental factors that often shape patient experiences but are underrepresented in research. We will discuss strategies for overcoming power imbalances between patients and researchers and ensuring that patients’ voices are meaningfully integrated into the research process. As we consider the challenges of PFE, we must also address the role of the EHR in reinforcing biases that can undermine inclusive patient engagement. This includes addressing the potential for EHR data to perpetuate biases and developing new methods for capturing patient-reported outcomes that better reflect the lived experiences of marginalized patients.
Panel Structure and Key Insights: The panel will consist of researchers, clinicians, and patient-partners who have been directly involved in the design and implementation of this study. Each panelist will provide a unique perspective on how systems engineering principles can be applied to optimize patient engagement in research. The session will begin with an introduction to the SEIPS 2.0 model and how it has been adapted to study patient engagement in codesign. This will be followed by a discussion of our preliminary findings, focusing on the challenges of data quality and accessibility within the EHR and how these challenges affect engagement.
Case Study Example: As an example of how patient engagement can improve health outcomes, we present the case of a middle-aged Black man struggling with hypertension and diabetes joined a codesign session on designing and implementing a text-message-based blood pressure monitoring. Initially skeptical, the man diligently participated in our three-week codesign and evaluation efforts. To his amazement, the simple act of engaging with the codesign efforts and later with testing the intervention (daily text messages) led to a 22-pound weight loss and blood pressure control for the next five-months. And furthermore, given his lifestyle changes, his diabetes is in control and he is off insulin. Both the patient and their primary care doctor credit his engagement in research for this positive health outcome.
Moderators
Event Type
Discussion Panel
TimeWednesday, April 28:30am - 10:00am EDT
LocationQueens Quay
Patient Safety and Research Initiatives (PS)