Implementing Patient-Centered Outcomes Research Institute Stakeholder Engagement Principles in Models of Palliative Care Delivery and Advance Care Planning Research
As part of the PCLN initiatives, representatives from the 9 PCORI-funded study teams formed a working group to review, outline, and describe key lessons learned and best practices for promoting stakeholder engagement in palliative care research. Guided by a conceptual model that describes PCORI’s theory of action for engagement in research and with the support of a PCORI Engagement Officer, from February 2023 through August 2023, this working group convened multiple meetings to discuss the different approaches to stakeholder engagement across the 9 studies. In this conceptual model, ideally, engagement activities lead to a higher quality of engagement, thus resulting in better research and partner outcomes. The working group also disseminated an online survey for each group member to complete in collaboration with their respective study teams about their experiences with stakeholder engagement. The 25-item survey included questions regarding the stakeholder target constituents, processes and methods for promoting engagement, barriers, and facilitators of stakeholder engagement, and impacts of engagement across the different phases of study implementation. After collating this information, the working group members met again to review the survey results to clarify and resolve any incomplete or unclear responses. The members then completed a follow-up 5-item survey to confirm methods for fostering stakeholder engagement and to rank order their top 3 barriers and top 3 facilitators for engaging their stakeholder partners among engagement methods, as well as barriers and facilitators to engagement identified during the initial 25-item survey. Finally, a follow-up survey tailored to the engagement strategies utilized by each team gathered practical guidance on how to adopt these strategies, and teams rated the perceived engagement quality of each engagement activity or method on a 5-point Likert scale (1–5, with 5 being the highest quality engagement). Surveys are available in the appendix, Supplemental Digital Content 1, http://links.lww.com/MLR/C851 . To ensure the accuracy and validity of the survey results, all working group members reviewed the manuscript before submission for publication. 

Stakeholder Engagement Groups and Support Structures As shown in Table , almost all study teams engaged with patients/caregivers, clinicians, researchers, and health care system experts as stakeholder partners. Approximately half the teams also included payers and training institutions as part of their stakeholder advisors. Given the unique aims of each trial, several teams identified other groups, such as professional society and disease-based organizations, faith leaders/chaplains, hospice center leadership, experts in serious illness communication and ACP, leaders in telehealth care delivery and research, and dissemination and implementation experts, as stakeholders for their respective studies. To develop comprehensive stakeholder engagement plans, study teams relied on a variety of support structures and resources. Specifically, patient and family advisory councils, local community organizations, support groups, religious communities, and practice-based research networks were instrumental in identifying patient and caregiver stakeholders. Clinicians, researchers, and health care system stakeholders often came from the participating centers, whereas payers and national advocacy and professional organizations (eg, palliative care organizations and disease-specific groups) with vested interests in the trial outcomes helped to identify representatives to serve as stakeholders. Finally, several study teams noted that PCORI Engagement Officers and resources, as well as NIH-funded resources, such as the Palliative Care Research Cooperative and Clinical & Translational Science Awards Program, were essential to supporting their stakeholder engagement efforts. Some teams drew on various frameworks and population-based models of patient-centered care to inform their selection of stakeholder groups and delineate stakeholder roles. For example, one team developed a specific framework to detail the roles and responsibilities of a stakeholder advisory member (PI: Johnson). Specifically, this framework included the following: (1) overview of the study and goals, (2) explanation of the purpose of the Stakeholder Advisory Council (SAC), (3) clarification of who can be a stakeholder (eg, patients and caregivers of diverse racial and ethnic backgrounds, community organizations, faith-based communities/religious leaders, hospice and home care workers, health care sector representatives, etc.), (4) roles and responsibilities of the stakeholder advisory member, (5) key qualifications needed to serve as a stakeholder advisor, (6) meeting frequency of the SAC, and (7) compensation for serving on the SAC. In addition, to enhance the diversity of stakeholder perspectives, most study teams conducted purposive sampling of patients, caregivers, and other key stakeholders based on a range of factors, including sociodemographic characteristics (ie, age, gender, race, ethnicity, socioeconomic status, immigration status, and preferred language); geographic region (ie, urban, rural, and across the United States or a particular state); clinical characteristics (ie, medical diagnoses such as cancer or heart disease, treatment phase, type of surgery, experience with health care, and advance care planning); health care role (ie, patient, caregiver, clinician, administrator, and policymaker); research experience; and representativeness of the populations receiving care at the study sites. Stakeholder Engagement Methods and Processes Table details the methods study teams used to foster stakeholder engagement. The primary means of collaboration between study teams and stakeholders was through regular meetings and/or working retreats. Most teams also endorsed the inclusion of site-level stakeholders to collaborate with study staff at each institution to ensure the successful implementation of their trials across multiple sites, as well as an overall Stakeholder Advisory Board to provide guidance on the stakeholder engagement processes. Teams highlighted the importance of bidirectional communication with summary reports after stakeholder meetings to outline collected feedback and corresponding study changes. Other methods to foster engagement included joint agenda planning for meetings, academic presentations and publications with stakeholders, newsletters, online surveys of the stakeholder experience, invited guest speakers to present to stakeholders, study websites highlighting patient and caregiver voices, and journal clubs. Table also details how the study teams implemented the engagement methods and rated the effectiveness of supporting engagement quality. All engagement methods were generally considered to be effective by teams who used the method, though there was some variability in team-rated engagement quality of each method. For example, regular meetings with stakeholders were an engagement strategy that was used by all 9 teams surveyed, and this strategy was rated highly in terms of effectiveness at supporting engagement quality by teams (4.9/5), while journal clubs were only used by 2 teams and rated lower (4/5) in terms of effectiveness at supporting engagement quality. In terms of logistics for regular meetings, the frequency of meetings between the study teams and their stakeholder partners varied, ranging from monthly to biannually for both patient/caregiver stakeholders and other study advisory group members, though the majority met quarterly for ~60 to 120 minutes. These meetings took place either in person or via telephone or video conference, most often consisting of PowerPoint presentations to provide study updates and guide discussion of key questions. Topics discussed during the meetings included study updates, milestones, challenges, ways to overcome challenges, and feedback relevant to study phase. The meeting frequency was higher during the launch of the trials, with some teams also hosting annual in-person gatherings at their institutions or other venues (eg, national conferences). After the onset of the COVID-19 pandemic, most stakeholder meetings took place virtually. All 9 study teams provided reimbursement or incentive payments for stakeholders, ranging from $50 to $100 per meeting, paid either by check or gift card. Managing reimbursement documentation for tax purposes per institutional policies was a challenge for some teams, and many stakeholders opted to forego reimbursement to support the projects. Additional details for how other engagement methods were implemented are included in Table . Barriers to Stakeholder Engagement We identified 9 barriers to stakeholder engagement across the 9 studies. The top 3 barriers, as ranked by teams (top 3 listed below per rank order), were common across 5 or more studies. Stakeholder turnover due to health (particularly patients), relocation, employment changes, and personal challenges (7 studies) COVID-19 preventing in-person meetings (6 studies). Maintaining the same level of engagement across geographic sites (5 studies). Ensuring the content presented was relevant to all groups (challenge of meetings that included patients, organizational leaders, payers, etc. all together) (3 studies). Need to educate IRB that stakeholders were study collaborators, not participants (3 studies). Clarification of roles and responsibilities of stakeholders (3 studies). Waning engagement/attendance as the study progressed (2 studies). Changing priorities of organizational leaders and secular trends (2 studies). Discerning which stakeholder recommendations were feasible to implement (2 studies) Facilitators of Stakeholder Engagement We identified 9 facilitators of stakeholder engagement that were used across the 9 studies to overcome barriers. The top 3 facilitators, as ranked by teams (top 3 listed below per rank order), were common across 6 or more studies. Dedicated resources such as staff/funding for engagement (6 studies). Ensuring time for listening to and discussion of feedback, including premeeting preparation with patient/caregiver team members (6 studies). Flexibility and openness to change approach/processes based on feedback (7 studies). Personal interactions between stakeholders and the PI and study team (6 studies). Infrastructure for communication (eg, Google groups, video teleconferencing for stakeholder meetings, weekly meetings, and newsletters) (6 studies). Providing education as part of an advisory group participation, such as for palliative care policy and research (6 studies). Developing camaraderie among participants (5 studies). Regular measurement and feedback regarding engagement expectations/processes (5 studies). Prior longitudinal relationships with patient stakeholders (4 studies). Impact of Stakeholder Engagement All but one study agreed or strongly agreed with the statement that stakeholder engagement with the research team was optimal. These teams highlighted that a high level of engagement and feedback were key aspects of study success resulting in strong ties with stakeholder groups. One team that neither agreed nor disagreed with this statement had a successful engagement with insurance partners and caregiver organizations but struggled with health care systems and national policy organizations, ultimately leading to challenges with recruitment. Teams provided clear examples of engagement and the impact of stakeholder feedback on study procedures (Table ). These examples show the high level of integration that stakeholders had in all aspects of the study, from the preparatory to the data analysis and dissemination phases. Preparatory Phase In developing their study proposals, teams noted that involving stakeholders during the preparatory phase helped shape the research design, study aims and measures, as well as training materials and structure and processes for intervention delivery. One example from the PAL LIVER study was identifying the study comparative groups and development of the research hypothesis. For this study, the research team formed a research advisory board (RAB) with patients diagnosed with end-stage liver disease and their caregivers, a few of whom had been a part of a prior feasibility trial of palliative care for similar patients undergoing evaluation for liver transplants. The RAB members voted for a study design to compare the effectiveness of palliative care services delivered by their own hepatologists versus palliative care subspecialists. The RAB members also proposed a superiority comparison, given the fact that hepatologists have a pre-existing relationship with their patients and a better understanding of their disease trajectory, which may benefit the model of hepatologist-delivered palliative care versus having a new provider. These discussions supported the refinement of comparative models of palliative care and proposed data analysis plan at a very early stage. Study Initiation Phase Study teams described how stakeholders assisted in the training of research staff, the development of strategies for how to introduce the concept of palliative care or ACP, as well as the development of patient-facing study materials. One example from the UC Health Care Planning Study shows how the community advisory board helped meet recruitment targets by recognizing early on that the 3-page HIPAA form required by the institution would hinder enrollment, which was later confirmed with quantitative data. During the initiation phase, several studies involved stakeholders to assist with developing and piloting survey instruments (including qualitative interviews), reviewing and refining recruitment scripts, and role-playing with research coordinators to explain the role of palliative care during the enrollment process, given the historical misconception of palliative care services referring only to end-of-life or hospice care. Execution Phase Study teams also described how stakeholder engagement helped overcome challenges with participant recruitment, intervention delivery, and data collection throughout the execution phase. For example, stakeholders of the early integrated telehealth versus in-person palliative care trial recommended conducting a survey of the study clinicians across the 22 sites involved in the trial to learn about the barriers and facilitators in providing palliative care via video visits and to identify any interventions that clinicians and support staff used to overcome the barriers in intervention delivery. Data Analysis and Dissemination Phase Stakeholders provided key insights on study results, including community advisory board members from the patient’s perspective. These insights often led to more robust analyses. For example, the policymaker and health care system stakeholders in one of the teams suggested considering different types of subgroup analyses that may be meaningful based on participants’ sociodemographic characteristics and social determinants of health, such as insurance status and type. Finally, study teams further described how stakeholders provided guidance on the dissemination of results to a broad audience (broader than would have been reached with the study team alone) and participated in the writing of journal articles as well as poster and oral (even plenary) presentations. 

As shown in Table , almost all study teams engaged with patients/caregivers, clinicians, researchers, and health care system experts as stakeholder partners. Approximately half the teams also included payers and training institutions as part of their stakeholder advisors. Given the unique aims of each trial, several teams identified other groups, such as professional society and disease-based organizations, faith leaders/chaplains, hospice center leadership, experts in serious illness communication and ACP, leaders in telehealth care delivery and research, and dissemination and implementation experts, as stakeholders for their respective studies. To develop comprehensive stakeholder engagement plans, study teams relied on a variety of support structures and resources. Specifically, patient and family advisory councils, local community organizations, support groups, religious communities, and practice-based research networks were instrumental in identifying patient and caregiver stakeholders. Clinicians, researchers, and health care system stakeholders often came from the participating centers, whereas payers and national advocacy and professional organizations (eg, palliative care organizations and disease-specific groups) with vested interests in the trial outcomes helped to identify representatives to serve as stakeholders. Finally, several study teams noted that PCORI Engagement Officers and resources, as well as NIH-funded resources, such as the Palliative Care Research Cooperative and Clinical & Translational Science Awards Program, were essential to supporting their stakeholder engagement efforts. Some teams drew on various frameworks and population-based models of patient-centered care to inform their selection of stakeholder groups and delineate stakeholder roles. For example, one team developed a specific framework to detail the roles and responsibilities of a stakeholder advisory member (PI: Johnson). Specifically, this framework included the following: (1) overview of the study and goals, (2) explanation of the purpose of the Stakeholder Advisory Council (SAC), (3) clarification of who can be a stakeholder (eg, patients and caregivers of diverse racial and ethnic backgrounds, community organizations, faith-based communities/religious leaders, hospice and home care workers, health care sector representatives, etc.), (4) roles and responsibilities of the stakeholder advisory member, (5) key qualifications needed to serve as a stakeholder advisor, (6) meeting frequency of the SAC, and (7) compensation for serving on the SAC. In addition, to enhance the diversity of stakeholder perspectives, most study teams conducted purposive sampling of patients, caregivers, and other key stakeholders based on a range of factors, including sociodemographic characteristics (ie, age, gender, race, ethnicity, socioeconomic status, immigration status, and preferred language); geographic region (ie, urban, rural, and across the United States or a particular state); clinical characteristics (ie, medical diagnoses such as cancer or heart disease, treatment phase, type of surgery, experience with health care, and advance care planning); health care role (ie, patient, caregiver, clinician, administrator, and policymaker); research experience; and representativeness of the populations receiving care at the study sites. 

Table details the methods study teams used to foster stakeholder engagement. The primary means of collaboration between study teams and stakeholders was through regular meetings and/or working retreats. Most teams also endorsed the inclusion of site-level stakeholders to collaborate with study staff at each institution to ensure the successful implementation of their trials across multiple sites, as well as an overall Stakeholder Advisory Board to provide guidance on the stakeholder engagement processes. Teams highlighted the importance of bidirectional communication with summary reports after stakeholder meetings to outline collected feedback and corresponding study changes. Other methods to foster engagement included joint agenda planning for meetings, academic presentations and publications with stakeholders, newsletters, online surveys of the stakeholder experience, invited guest speakers to present to stakeholders, study websites highlighting patient and caregiver voices, and journal clubs. Table also details how the study teams implemented the engagement methods and rated the effectiveness of supporting engagement quality. All engagement methods were generally considered to be effective by teams who used the method, though there was some variability in team-rated engagement quality of each method. For example, regular meetings with stakeholders were an engagement strategy that was used by all 9 teams surveyed, and this strategy was rated highly in terms of effectiveness at supporting engagement quality by teams (4.9/5), while journal clubs were only used by 2 teams and rated lower (4/5) in terms of effectiveness at supporting engagement quality. In terms of logistics for regular meetings, the frequency of meetings between the study teams and their stakeholder partners varied, ranging from monthly to biannually for both patient/caregiver stakeholders and other study advisory group members, though the majority met quarterly for ~60 to 120 minutes. These meetings took place either in person or via telephone or video conference, most often consisting of PowerPoint presentations to provide study updates and guide discussion of key questions. Topics discussed during the meetings included study updates, milestones, challenges, ways to overcome challenges, and feedback relevant to study phase. The meeting frequency was higher during the launch of the trials, with some teams also hosting annual in-person gatherings at their institutions or other venues (eg, national conferences). After the onset of the COVID-19 pandemic, most stakeholder meetings took place virtually. All 9 study teams provided reimbursement or incentive payments for stakeholders, ranging from $50 to $100 per meeting, paid either by check or gift card. Managing reimbursement documentation for tax purposes per institutional policies was a challenge for some teams, and many stakeholders opted to forego reimbursement to support the projects. Additional details for how other engagement methods were implemented are included in Table . 

We identified 9 barriers to stakeholder engagement across the 9 studies. The top 3 barriers, as ranked by teams (top 3 listed below per rank order), were common across 5 or more studies. Stakeholder turnover due to health (particularly patients), relocation, employment changes, and personal challenges (7 studies) COVID-19 preventing in-person meetings (6 studies). Maintaining the same level of engagement across geographic sites (5 studies). Ensuring the content presented was relevant to all groups (challenge of meetings that included patients, organizational leaders, payers, etc. all together) (3 studies). Need to educate IRB that stakeholders were study collaborators, not participants (3 studies). Clarification of roles and responsibilities of stakeholders (3 studies). Waning engagement/attendance as the study progressed (2 studies). Changing priorities of organizational leaders and secular trends (2 studies). Discerning which stakeholder recommendations were feasible to implement (2 studies) 

We identified 9 facilitators of stakeholder engagement that were used across the 9 studies to overcome barriers. The top 3 facilitators, as ranked by teams (top 3 listed below per rank order), were common across 6 or more studies. Dedicated resources such as staff/funding for engagement (6 studies). Ensuring time for listening to and discussion of feedback, including premeeting preparation with patient/caregiver team members (6 studies). Flexibility and openness to change approach/processes based on feedback (7 studies). Personal interactions between stakeholders and the PI and study team (6 studies). Infrastructure for communication (eg, Google groups, video teleconferencing for stakeholder meetings, weekly meetings, and newsletters) (6 studies). Providing education as part of an advisory group participation, such as for palliative care policy and research (6 studies). Developing camaraderie among participants (5 studies). Regular measurement and feedback regarding engagement expectations/processes (5 studies). Prior longitudinal relationships with patient stakeholders (4 studies). 

All but one study agreed or strongly agreed with the statement that stakeholder engagement with the research team was optimal. These teams highlighted that a high level of engagement and feedback were key aspects of study success resulting in strong ties with stakeholder groups. One team that neither agreed nor disagreed with this statement had a successful engagement with insurance partners and caregiver organizations but struggled with health care systems and national policy organizations, ultimately leading to challenges with recruitment. Teams provided clear examples of engagement and the impact of stakeholder feedback on study procedures (Table ). These examples show the high level of integration that stakeholders had in all aspects of the study, from the preparatory to the data analysis and dissemination phases. Preparatory Phase In developing their study proposals, teams noted that involving stakeholders during the preparatory phase helped shape the research design, study aims and measures, as well as training materials and structure and processes for intervention delivery. One example from the PAL LIVER study was identifying the study comparative groups and development of the research hypothesis. For this study, the research team formed a research advisory board (RAB) with patients diagnosed with end-stage liver disease and their caregivers, a few of whom had been a part of a prior feasibility trial of palliative care for similar patients undergoing evaluation for liver transplants. The RAB members voted for a study design to compare the effectiveness of palliative care services delivered by their own hepatologists versus palliative care subspecialists. The RAB members also proposed a superiority comparison, given the fact that hepatologists have a pre-existing relationship with their patients and a better understanding of their disease trajectory, which may benefit the model of hepatologist-delivered palliative care versus having a new provider. These discussions supported the refinement of comparative models of palliative care and proposed data analysis plan at a very early stage. Study Initiation Phase Study teams described how stakeholders assisted in the training of research staff, the development of strategies for how to introduce the concept of palliative care or ACP, as well as the development of patient-facing study materials. One example from the UC Health Care Planning Study shows how the community advisory board helped meet recruitment targets by recognizing early on that the 3-page HIPAA form required by the institution would hinder enrollment, which was later confirmed with quantitative data. During the initiation phase, several studies involved stakeholders to assist with developing and piloting survey instruments (including qualitative interviews), reviewing and refining recruitment scripts, and role-playing with research coordinators to explain the role of palliative care during the enrollment process, given the historical misconception of palliative care services referring only to end-of-life or hospice care. Execution Phase Study teams also described how stakeholder engagement helped overcome challenges with participant recruitment, intervention delivery, and data collection throughout the execution phase. For example, stakeholders of the early integrated telehealth versus in-person palliative care trial recommended conducting a survey of the study clinicians across the 22 sites involved in the trial to learn about the barriers and facilitators in providing palliative care via video visits and to identify any interventions that clinicians and support staff used to overcome the barriers in intervention delivery. Data Analysis and Dissemination Phase Stakeholders provided key insights on study results, including community advisory board members from the patient’s perspective. These insights often led to more robust analyses. For example, the policymaker and health care system stakeholders in one of the teams suggested considering different types of subgroup analyses that may be meaningful based on participants’ sociodemographic characteristics and social determinants of health, such as insurance status and type. Finally, study teams further described how stakeholders provided guidance on the dissemination of results to a broad audience (broader than would have been reached with the study team alone) and participated in the writing of journal articles as well as poster and oral (even plenary) presentations. 

In developing their study proposals, teams noted that involving stakeholders during the preparatory phase helped shape the research design, study aims and measures, as well as training materials and structure and processes for intervention delivery. One example from the PAL LIVER study was identifying the study comparative groups and development of the research hypothesis. For this study, the research team formed a research advisory board (RAB) with patients diagnosed with end-stage liver disease and their caregivers, a few of whom had been a part of a prior feasibility trial of palliative care for similar patients undergoing evaluation for liver transplants. The RAB members voted for a study design to compare the effectiveness of palliative care services delivered by their own hepatologists versus palliative care subspecialists. The RAB members also proposed a superiority comparison, given the fact that hepatologists have a pre-existing relationship with their patients and a better understanding of their disease trajectory, which may benefit the model of hepatologist-delivered palliative care versus having a new provider. These discussions supported the refinement of comparative models of palliative care and proposed data analysis plan at a very early stage. 

Study teams described how stakeholders assisted in the training of research staff, the development of strategies for how to introduce the concept of palliative care or ACP, as well as the development of patient-facing study materials. One example from the UC Health Care Planning Study shows how the community advisory board helped meet recruitment targets by recognizing early on that the 3-page HIPAA form required by the institution would hinder enrollment, which was later confirmed with quantitative data. During the initiation phase, several studies involved stakeholders to assist with developing and piloting survey instruments (including qualitative interviews), reviewing and refining recruitment scripts, and role-playing with research coordinators to explain the role of palliative care during the enrollment process, given the historical misconception of palliative care services referring only to end-of-life or hospice care. 

Study teams also described how stakeholder engagement helped overcome challenges with participant recruitment, intervention delivery, and data collection throughout the execution phase. For example, stakeholders of the early integrated telehealth versus in-person palliative care trial recommended conducting a survey of the study clinicians across the 22 sites involved in the trial to learn about the barriers and facilitators in providing palliative care via video visits and to identify any interventions that clinicians and support staff used to overcome the barriers in intervention delivery. 

Stakeholders provided key insights on study results, including community advisory board members from the patient’s perspective. These insights often led to more robust analyses. For example, the policymaker and health care system stakeholders in one of the teams suggested considering different types of subgroup analyses that may be meaningful based on participants’ sociodemographic characteristics and social determinants of health, such as insurance status and type. Finally, study teams further described how stakeholders provided guidance on the dissemination of results to a broad audience (broader than would have been reached with the study team alone) and participated in the writing of journal articles as well as poster and oral (even plenary) presentations. 

Stakeholder engagement can enhance research efficiency and its true impact on study processes and outcomes. All 9 studies included comprehensive stakeholder engagement plans that incorporated the perspectives and voices of patients and families, clinicians, and researchers. Policymakers and representatives from health care systems, payers, and training institutions also served as key stakeholders, in addition to a range of content experts depending on the focus of the study. Teams utilized a variety of resources and support structures as well as capitalized on multiple engagement methods for fostering stakeholder engagement, resulting in a high level of collaboration and integration. All engagement methods were perceived to be effective in supporting engagement quality (lowest score 4/5 on 5-point Likert scale, with a score of 5 reflecting the highest quality engagement), though there was some variability in the frequency of use across teams as well as the perceived effectiveness in supporting engagement quality. While our teams perceived that engagement methods were effective in achieving engagement quality, future research should formally measure if increased engagement quality is associated with differences in research and partner outcomes. We conclude that broad and well-integrated stakeholder engagement is essential for the success of real-world research focused on palliative care and ACP. Despite efforts to improve messaging and communication about these topics, – confusion persists regarding the semantics and philosophical focus of palliative care and ACP, including among physicians, even among those in our own field. – Stakeholder engagement is therefore essential, especially in palliative care and ACP research, to support overcoming misperceptions and ensure that interventions are implemented and evaluated successfully. Interestingly, while barriers varied across our diverse studies, with the majority of barriers identified by less than half of the studies, facilitators were common across studies, with 8/9 identified facilitators utilized by the majority of the participating studies. This consistency in reported facilitators likely represents the benefits of a learning collaborative. Although the studies had different designs, covered different geographic areas, and encountered different challenges, many of the approaches to overcome barriers were shared and utilized across studies in the PCLN. Successful stakeholder engagement requires a well-conceived prospective approach, and the methods for stakeholder engagement and facilitators of successful engagement described in this paper can serve as a reference of best practices for other palliative care and ACP studies. We hope the experiences and shared knowledge that we collaboratively collated will support teams considering engaging with stakeholders for their research, enhance understanding of the benefits this collaboration can bring, provide a simple guide on steps and processes for successful engagement, and assist with identifying and overcoming challenges that might occur throughout the different study phases. 

 

