Applying a community-based participatory research framework to patient and family engagement in the development of patient-centered outcomes research and practice

Applying a community-based participatory research framework to patient and family engagement in... Abstract There has been increasing recognition of the need to engage patients, families, and other patient stakeholders in research. This article seeks to provide understanding and examples of how to apply core principles of community-based participatory research (CBPR) in developing patient-centered outcomes research (PCOR) that can impact clinical and public health practice. Authors review CBPR principles and demonstrate how to translate them into effective PCOR strategies. Common themes of CBPR principles and PCOR strategies are related to: (a) fostering joint ownership in the identification of health priorities, the development and evaluation of research strategies and their design, and the dissemination of findings; (b) a keen recognition and appreciation for the importance of stakeholder-driven priorities, research, and solutions; (c) building capacity of both stakeholders and researchers to engage in research collaboratively; and (d) recognizing that conducting the research is not the endpoint but continues on with a commitment to dissemination, spread, adoption and sustainability. The authors highlight the specific strategies in which these CBPR principles can be translated for use in engaging patients and families, and including other stakeholders such as care providers, community partner organizations, health systems, and insurers, in the research process to ensure the development of PCOR. Implications Practice: Applying a community-based participatory research (CBPR) approach to patient-centered outcomes research (PCOR) facilitates meaningful patient and family engagement, the development of clinical and public health practices relevant to “patient community” needs, and sustainable outcome-oriented research. Policy: Policymakers, health systems and organizations need to be invested in PCOR in order to identify collaborative and sustainable clinical and public health practices that can benefit all patient communities. Research: To achieve clinical and public health impact in PCOR, researchers need to consider applying principles of community-based participatory research and engaging diverse stakeholders. INTRODUCTION In the last two decades, there has been increasing recognition of the need to engage communities in research. Due to the poor uptake and adoption of evidence-based interventions in real world settings, there has been a clear shift away from research conducted in tightly controlled environments, and towards meaningful and sustainable interventions that engage community stakeholders and are tested in real world settings [1–5]. The complexity of real world clinical and community settings requires stakeholder engagement early on in the development and implementation process and later in the evaluation and dissemination process to ensure improved translation of efficacy and effectiveness into adoption and practice. Collaboration with stakeholders provides detailed knowledge of individual community needs, resources, and cultural norms and expectations thus enhancing the likelihood of an intervention’s success and sustainability within a community [6]. Community-based participatory research (CBPR)—a form of community-engaged research that actively involves community stakeholders throughout the research process—has increasingly been looked to as a framework for facilitating collaboration between community stakeholders and academic researchers [4, 7–9]. CBPR’s focus on “community ownership” is designed to improve the adoption, maintenance and sustainability of evidence-based interventions, especially for populations who experience health disparities and may distrust the health care system or have limited resources to implement interventions. By engaging the community throughout the translation and implementation process, exploring best practices and community capacity building, and providing culturally and linguistically adapted interventions, CBPR methods have the potential to enhance the success of interventions within a real world setting [6]. The increasing attention to engagement has also shifted emphasis from communities to individual patients and their caregivers/families with increased calls for both patient-centered and family-centered approaches to population health, embodied in the establishment of the Patient Centered Outcomes Research Institute (PCORI) [10]. Patient engagement strategies include reaching out to individuals with lived experiences of a specific illness and the caregivers/family members who are involved in caring for these individuals. With recent health care reform initiatives, there is also consideration of involving a broader definition of stakeholder engagement and defining the taxonomy of what constitutes stakeholders [11]. In addition to patients, patient advocacy groups, families, and other caregivers, this broader definition of stakeholders has grown to include providers, payers, clinicians, hospitals and health systems, and policy makers [12]. Despite the increased call for stakeholder engagement in research, many researchers are struggling with how best to engage a wide and diverse group of stakeholders that ensures research is patient-centered, methodologically rigorous in its approach, generalizable to different populations and settings, and enhances spread and adoption into clinical and public health practice, thus benefiting communities in need. Given CBPR’s emphasis on involving a diverse set of stakeholders in the research process, including patients, caregivers, and family members, we believe the utilization of core CBPR principles can assist researchers looking to develop effective and efficient patient-centered research. As such, the purpose of this article is to provide understanding and examples of how to apply core CBPR principles in developing patient-centered outcomes research (PCOR) that actively engages and with the long-term goal to impact health outcomes and care to benefit and reach patients and families. THE IMPACT OF PCORI ON DEFINING PATIENT CENTEREDNESS IN CLINCAL RESEARCH AND PCOR In 2010, with the passage of the Patient Protection and Affordable Care Act (PPACA), PCORI was formally authorized and created [13]. PCORI’s mission is to help “people make informed health care decisions, and improve health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community [14].” With the establishment of PCORI, there was an unprecedented opportunity to further strengthen the consumer voice and ensure that patient and family perspectives were integrated within health outcomes research. In doing so, PPACA catalyzed national efforts for changing the way health services research was conducted, shifting greater priority on outcomes that were patient-centered and focused on issues and concerns germane to patients. Measures such as quality of life, self-determination, self-efficacy, and autonomy, are now becoming of equal value in research as those variables that have long-been considered as primary outcomes, such as, improved medication adherence and clinical outcomes. The funding landscape and interest has shifted considerably as a consequence of PPACA, the formal establishment of PCORI, and the level and criteria of review adhered by PCORI for genuine patient and family engagement in research. To guide these efforts PCORI has developed a patient/stakeholder engagement rubric that is used to guide researchers and reviewers on what is “good” patient-engaged research [15]. This rubric was designed to be a “practical resource that distills and prioritizes information from promising practices intended to systematically bring stakeholders into the research process in the most impactful way” during the three general phases of research: planning, conduct, and dissemination [16]. It includes potential activities for each phase, as well as real world examples of each. It was designed using a three-step process: (a) a review of research applications to develop a draft rubric; (b) the refinement of the draft rubric by the Advisory Panel on Patient Engagement, which consisted of “patient, caregiver, patient advocate, industry, clinician, and researcher representatives;” and (c) final review by senior PCOR engagement staff [16]. The rubric is intended to be a “living document” that is open to change as more knowledge is acquired and more research completed [16]. There is renewed interest by researchers and scholars regarding the most effective ways to incorporate patient perspective and patient-driven outcomes research into PCOR “big data” and other initiatives [17–19]; however, such analyses have failed to provide bigger-picture strategies for ways in which to meaningfully engage patient stakeholders throughout the research process. Meaningful collaboration with patient stakeholders, for example, can provide information about the patient context, allowing researchers to tailor interventions and strategies to maximize feasibility and increase the external validity [20]. CHALLENGES IN PATIENT AND FAMILY ENGAGEMENT IN RESEARCH Although there has been recent increased interest in patient and family engagement in healthcare research, there is a dearth of information related to the appropriate tools for measurement and evaluation, including economic analyses of associated costs [21–23]. Additionally, there remains a poor understanding of best practices for patient and family engagement due to a general lack of comparative analytic studies. In a recent systematic review, Domecq et al. [24] highlighted the need for comparative evidence to support the value of patient engagement to both researchers and potential stakeholders. Another pressing question raised by the growing body of research around patient and family engagement is how best to address a number of potential challenges incurred when employing a research approach that calls for active and equitable input from stakeholders outside academic medical centers. A commonly reported barrier for researchers involved in patient and family engagement is the extra time required by all parties involved to establish, develop, and maintain relationships and trust required for a truly fruitful partnership [24]. There also exists a high likelihood that both researchers and stakeholders require capacity building in several areas—coalition building and qualitative research methods for the former [25], and training in traditional research methods for the latter [26, 27]. Additionally, researchers may not have available funding for the types of personnel, training, and activities that may be required, which include staff time, events, incentives, etc. As Minogue et al. [25] states, effective engagement of stakeholders throughout all phases of the research process “cannot be cost neutral,” and therefore available funding mechanisms must consider these activities as an integral project deliverable. Domecq et al. also noted in their review that patient and family engagement in the research process may potentially involve “scope creep” or competing priorities, in that the researcher’s agenda and priorities are likely different from those of patients, families, and/or other stakeholders [24, 25, 28, 29]. This particular phenomena can be a challenge to the researcher’s usual position within the hierarchical structure of academia, as well as to the intensive focus placed upon randomized controlled trial (RCT) designs as the gold standard used within the field [30]. In order to help reconcile these competing priorities, regular, well-structured meetings and discussions with stakeholders should occur to establish effective channels of communication [20]. Memorandums of Understanding (MOUs) can be collaboratively developed to formalize partnerships and clearly define roles, responsibilities and activities of all stakeholders [7]. One evaluation of a CBPR study described the importance of a “partnership retreat” in which partners examined respective priorities [31]. An additional challenge to validity when engaging stakeholders is the potential for selection bias when identifying and recruiting individuals throughout the research process. There is a high potentiality that those who participate in pre-trial design activities may be more intrinsically motivated to participate, and therefore not representative of the intended patient population as a whole [26, 28, 32–35]. RATIONALE FOR APPLYING A CBPR FRAMEWORK TO ADVANCE PATIENT AND FAMILY ENGAGEMENT Given the numerous challenges associated with patient engagement in research, how might a CBPR approach advance the PCOR agenda? First, the core principles of CBPR, with its focus on engaging community stakeholders throughout the research process to develop action-oriented research, is both ideologically and practically congruous with PCOR’s central tenets. Similarly, PCOR aims to engage diverse groups of patients, family members, and caregivers in prioritizing research questions, and participating in the research process, including evaluating and disseminating results. PCORI has also advanced this further by endorsing patient stakeholder participation in the leadership and governance of national and local PCOR initiatives [19]. Second, CBPR is rooted in a several-decades long evidence base demonstrating improved health outcomes [36, 37], and has a vibrant community of scholars and practitioners that offer practical guides for the implementation of CBPR studies, which can be leveraged by PCOR researchers [4, 38]. Finally, CBPR has been especially successful in engaging socioeconomically and racially/ethnically diverse communities [7, 39]. A central concern of PCOR efforts is that those patients most likely to be active participants in the research process may not reflect the diversity of the U.S. healthcare system’s patient population [40]; thus, the CBPR framework may offer strategies for engagement with diverse populations. USING CBPR PRINCIPLES TO ADVANCE PATIENT, FAMILY, AND STAKEHOLDER ENGAGEMENT RESEARCH AND PRACTICE The principles underlying strategies for community engagement, including CBPR, can inform strategies for advancing patient, family, and other stakeholder engagement. Community engagement falls along a defined spectrum from little engagement to very participatory and/or partnered approaches [30, 41]. The spectrum of community-engaged research can generally be classified under three major categories: (a) community-placed/based research with no community input (e.g., researcher conducts research in the community but does not engage community at any level of research); (b) community-placed/based research with some community input (e.g., researcher conducts research in the community and limits community role to help recruiting participants into the study through existing networks and other community resources); and (c) CBPR with community input. CBPR represents the gold standard for engaging stakeholders in community-engaged research because CBPR is “a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings” [42]. Similarly, for PCOR, patient, families, and other stakeholder (e.g., clinicians, payers, hospitals and health care systems, and policy makers) [16] engagement also falls within a wide spectrum of involvement in research, from very little involvement, such as through informants and consultation, to very involved through collaboration and empowerment (Fig. 1). CBPR methods can help to strengthen processes for patient, family, and stakeholder engagement [43] that reflect genuine collaboration and moves towards empowerment of patients, their caregivers, families, and other stakeholders, such as community-based social service agencies serving the target community, in the research process in ways that are meaningful and informs sustainability. Fig 1 View largeDownload slide Spectrum of patient and stakeholder engagement in research. Adapted from IAP2’s (International Association for Public Participation) Public Participation Spectrum [51]. Developed by Northwestern University Center for Community Health. Fig 1 View largeDownload slide Spectrum of patient and stakeholder engagement in research. Adapted from IAP2’s (International Association for Public Participation) Public Participation Spectrum [51]. Developed by Northwestern University Center for Community Health. Israel [44] delineates nine core CBPR principles and strategies for developing participatory research in partnership with community stakeholders. These same CBPR principles can be considered and adapted in developing strategies that are salient to patient and family engagement in research: Collaborative, equitable partnership in all phases of research Community is the unit of identity CBPR builds on strengths and resources of community CBPR fosters co-learning and capacity building Balance between knowledge generation and benefit for community partners CBPR focuses on problems of local relevance CBPR occurs through a cyclical and iterative process CBPR disseminates results to all partners and involves them in wider dissemination of results CBPR involves a long-term process and commitment to sustainability. The above core principles of CBPR represent the ideal values of community engagement, although it is not regarded as a “one size fits all” approach. Instead, CBPR needs to be regarded as an overall orientation, rather than a specific methodology or set of methodologies [4]. Each researcher and respective stakeholder needs to consider the ways in which an effective partnership can be guided by the above principles, and strive to implement research that addresses the aforementioned challenges with a collaborative approach [44]. For example the collective impact approach works to engage multiple players/stakeholders in working together to solve complex social problems. The principles of CBPR can be applied to carry out the five conditions for successful stakeholder engagement including (a) identifying a common agenda; (b) agreeing on the shared measures; (c) coordinating the mutually reinforcing activities; (d) fostering continuous communication; and identifying a backbone support organization [45]. Based on previous work developing PCOR engagement strategies [16] and previous work highlighting the practical application of CBPR principals to inform PCOR engagement strategies [43], we developed Table 1, which provides examples of each of the nine core CBPR principles, their relationship and alignment with suggested PCOR strategies, potential stakeholder and researcher challenges, and strategies to address these challenges. Common themes of CBPR principles, PCOR strategies, and relevant implementation challenges are related to: (a) fostering joint ownership in the identification of health priorities, the development and evaluation of research strategies and their design, and the dissemination of findings; (b) a keen recognition and appreciation for the importance of stakeholder-driven priorities, research, and solutions; (c) building capacity of both stakeholders and researchers to engage in research collaboratively; and (d) recognizing that conducting the research is not the endpoint but continues on with a commitment to dissemination in traditional and nontraditional venues and working towards sustainability. Table 1 Integrating a CBPR approach to patient and family and other stakeholdera engagement in patient-centered outcomes research Community-based participatory research (CBPR) principle Patient-centered outcomes research (PCOR) strategy Potential challenges for consideration Practical applications of PCOR strategies using CBPR principles Stakeholders Researchers Collaborative, equitable partnership in all phases of research— from identifying priorities to design to intervention development and implementation to evaluation to dissemination Research with patients as full partner Researcher and patient stakeholders share control equally Distrust of researchers and their agendas Varying perceptions of equitable power-sharing Lack of established contacts with key community-based organizations or individual champions from the target community Lack of history of working with the community and understanding of community politics and experiences Include a patient representative or patient advocacy group as co-leads of an application Involve patient stakeholders input fully in the decision-making, development, implementation, evaluation and dissemination process Community is the unit of identity—focus is on the community People as participants and collaborators Fostering ownership that the project is aligned with patient/caregiver/ target community concerns or priorities Engaging the right patient stakeholders and ensuring that the representation is reflective of patient, caregiver, and other stakeholder priorities and interests Create a stakeholder board that represents different perspectives of the patient community Develop multiple strategies for gaining input and perspectives from diverse constituents/stakeholders CBPR builds on strengths and resources of community Uses an asset-based approach to developing interventions building on assets in patient, caregivers, family, and provider settings Need to activate or empower patients and caregivers to voice their concerns, challenges, and strategies that they perceive will build on their existing resources and assets Moving researchers from a biomedical focus to contextualizing illness within cultural, social, and family norms Considering strategies that shift away from a deficit perspective to one that focuses on patient/caregiver assets and resources Employing activation and motivational interviewing strategies for patient/ caregivers to help them feel comfortable about voicing and participating in discussions related to appropriate intervention strategies Providing learning exchanges geared to researchers about illness and sociocultural perspectives that apply an asset-based framework CBPR fosters co-learning and capacity building Researchers and patient stakeholders work together to help build community capacity Patient representatives or organizations may have limited experiences in developing or understanding the research process Researchers may be unfamiliar with how to identify contexts and dynamics that impact stakeholder lived experience with the clinical outcome (s) of interest Conduct learning exchanges in which both researchers and stakeholders provide expertise relevant to the research process. Examples include research methods training for stakeholders, and coalition- and consensus-building for researchers Balance between knowledge generation and benefit for community partners Researchers and patient stakeholders identify at the outset their expectations goals of the research to be conducted and determine the practical benefit for patient stakeholders in engaging research Stakeholders may feel unsatisfied with traditional RCT study design (e.g., receiving placebo or usual care) Researchers may be unfamiliar with research methods outside of the RCT standard that may be more appropriate or relevant to stakeholders Explore study designs that balance scientific rigor with benefits to participants and perceived community concerns of the ethics of doing research (such as depriving a group of individuals from a beneficial intervention). Examples include comparative-effectiveness trials that compare two or more relevant strategies, cross-over control or wait-list control designs CBPR focuses on problems of local relevance—communities determine the priorities Stakeholders identify problem or works with researcher to identify problem Stakeholders may be interested in outcomes or measures beyond the research project Researchers may feel threatened by potential “scope creep” or challenged by balancing scientific rigor with relevance of research to stakeholders Conduct a multi-method formative assessment that includes input from these stakeholders in the design, evaluation, and interpretation of findings and contextualizing these findings in the experiences of patients/caregivers CBPR occurs through a cyclical and iterative process Goal of the research is not only about advancing knowledge but includes a process that allows for reflection, quality improvement, and actions related to improving engagement and sustainability that includes ongoing assessments of successes and challenges Stakeholders may have limited experience in participating in research and may need orientation and training related to their role in research and feel empowered to share their perspectives of what works and doesn’t work Researchers may have limited experience to doing formative research or utilizing other methodologies that can help understand why a program and/or partnership is struggling. Researchers may also be concerned that this cyclical and iterative process is too labor and time intensive Work with all stakeholders involved to identify measurable immediate successes and processes to identify challenges and potential solutions CBPR disseminates results to all partners and involves them in wider dissemination of results Data is shared, researchers and patient stakeholders decide its use and dissemination Stakeholders may be interested in dissemination that has immediate, practical benefit and place lower prioritization on dissemination via peer-reviewed publications Researchers may lack the skills to understand how to articulate or convey scientific information in a manner accessible and meaningful to lay audiences Disseminate findings through multiple vehicles and strategies, including patient forums, newspaper articles, policy briefs, monographs, community forums, patient education tools, provider education resources, and peer-reviewed articles CBPR involves a long-term process and commitment to sustainability Sustainability is an ongoing goal to strive towards Stakeholders may have prior experiences working with researchers that disappear after data collection Intended research may be limited by project periods or funding cycles Place sustainability as a goal at the outset of the project and consider potential strategies for sustaining efforts throughout the life of the research Community-based participatory research (CBPR) principle Patient-centered outcomes research (PCOR) strategy Potential challenges for consideration Practical applications of PCOR strategies using CBPR principles Stakeholders Researchers Collaborative, equitable partnership in all phases of research— from identifying priorities to design to intervention development and implementation to evaluation to dissemination Research with patients as full partner Researcher and patient stakeholders share control equally Distrust of researchers and their agendas Varying perceptions of equitable power-sharing Lack of established contacts with key community-based organizations or individual champions from the target community Lack of history of working with the community and understanding of community politics and experiences Include a patient representative or patient advocacy group as co-leads of an application Involve patient stakeholders input fully in the decision-making, development, implementation, evaluation and dissemination process Community is the unit of identity—focus is on the community People as participants and collaborators Fostering ownership that the project is aligned with patient/caregiver/ target community concerns or priorities Engaging the right patient stakeholders and ensuring that the representation is reflective of patient, caregiver, and other stakeholder priorities and interests Create a stakeholder board that represents different perspectives of the patient community Develop multiple strategies for gaining input and perspectives from diverse constituents/stakeholders CBPR builds on strengths and resources of community Uses an asset-based approach to developing interventions building on assets in patient, caregivers, family, and provider settings Need to activate or empower patients and caregivers to voice their concerns, challenges, and strategies that they perceive will build on their existing resources and assets Moving researchers from a biomedical focus to contextualizing illness within cultural, social, and family norms Considering strategies that shift away from a deficit perspective to one that focuses on patient/caregiver assets and resources Employing activation and motivational interviewing strategies for patient/ caregivers to help them feel comfortable about voicing and participating in discussions related to appropriate intervention strategies Providing learning exchanges geared to researchers about illness and sociocultural perspectives that apply an asset-based framework CBPR fosters co-learning and capacity building Researchers and patient stakeholders work together to help build community capacity Patient representatives or organizations may have limited experiences in developing or understanding the research process Researchers may be unfamiliar with how to identify contexts and dynamics that impact stakeholder lived experience with the clinical outcome (s) of interest Conduct learning exchanges in which both researchers and stakeholders provide expertise relevant to the research process. Examples include research methods training for stakeholders, and coalition- and consensus-building for researchers Balance between knowledge generation and benefit for community partners Researchers and patient stakeholders identify at the outset their expectations goals of the research to be conducted and determine the practical benefit for patient stakeholders in engaging research Stakeholders may feel unsatisfied with traditional RCT study design (e.g., receiving placebo or usual care) Researchers may be unfamiliar with research methods outside of the RCT standard that may be more appropriate or relevant to stakeholders Explore study designs that balance scientific rigor with benefits to participants and perceived community concerns of the ethics of doing research (such as depriving a group of individuals from a beneficial intervention). Examples include comparative-effectiveness trials that compare two or more relevant strategies, cross-over control or wait-list control designs CBPR focuses on problems of local relevance—communities determine the priorities Stakeholders identify problem or works with researcher to identify problem Stakeholders may be interested in outcomes or measures beyond the research project Researchers may feel threatened by potential “scope creep” or challenged by balancing scientific rigor with relevance of research to stakeholders Conduct a multi-method formative assessment that includes input from these stakeholders in the design, evaluation, and interpretation of findings and contextualizing these findings in the experiences of patients/caregivers CBPR occurs through a cyclical and iterative process Goal of the research is not only about advancing knowledge but includes a process that allows for reflection, quality improvement, and actions related to improving engagement and sustainability that includes ongoing assessments of successes and challenges Stakeholders may have limited experience in participating in research and may need orientation and training related to their role in research and feel empowered to share their perspectives of what works and doesn’t work Researchers may have limited experience to doing formative research or utilizing other methodologies that can help understand why a program and/or partnership is struggling. Researchers may also be concerned that this cyclical and iterative process is too labor and time intensive Work with all stakeholders involved to identify measurable immediate successes and processes to identify challenges and potential solutions CBPR disseminates results to all partners and involves them in wider dissemination of results Data is shared, researchers and patient stakeholders decide its use and dissemination Stakeholders may be interested in dissemination that has immediate, practical benefit and place lower prioritization on dissemination via peer-reviewed publications Researchers may lack the skills to understand how to articulate or convey scientific information in a manner accessible and meaningful to lay audiences Disseminate findings through multiple vehicles and strategies, including patient forums, newspaper articles, policy briefs, monographs, community forums, patient education tools, provider education resources, and peer-reviewed articles CBPR involves a long-term process and commitment to sustainability Sustainability is an ongoing goal to strive towards Stakeholders may have prior experiences working with researchers that disappear after data collection Intended research may be limited by project periods or funding cycles Place sustainability as a goal at the outset of the project and consider potential strategies for sustaining efforts throughout the life of the research aStakeholder: patient, family, community-based social service agencies, practice/implementation sites, providers, public agencies, funders, hospital and health systems, policy makers. View Large Table 1 Integrating a CBPR approach to patient and family and other stakeholdera engagement in patient-centered outcomes research Community-based participatory research (CBPR) principle Patient-centered outcomes research (PCOR) strategy Potential challenges for consideration Practical applications of PCOR strategies using CBPR principles Stakeholders Researchers Collaborative, equitable partnership in all phases of research— from identifying priorities to design to intervention development and implementation to evaluation to dissemination Research with patients as full partner Researcher and patient stakeholders share control equally Distrust of researchers and their agendas Varying perceptions of equitable power-sharing Lack of established contacts with key community-based organizations or individual champions from the target community Lack of history of working with the community and understanding of community politics and experiences Include a patient representative or patient advocacy group as co-leads of an application Involve patient stakeholders input fully in the decision-making, development, implementation, evaluation and dissemination process Community is the unit of identity—focus is on the community People as participants and collaborators Fostering ownership that the project is aligned with patient/caregiver/ target community concerns or priorities Engaging the right patient stakeholders and ensuring that the representation is reflective of patient, caregiver, and other stakeholder priorities and interests Create a stakeholder board that represents different perspectives of the patient community Develop multiple strategies for gaining input and perspectives from diverse constituents/stakeholders CBPR builds on strengths and resources of community Uses an asset-based approach to developing interventions building on assets in patient, caregivers, family, and provider settings Need to activate or empower patients and caregivers to voice their concerns, challenges, and strategies that they perceive will build on their existing resources and assets Moving researchers from a biomedical focus to contextualizing illness within cultural, social, and family norms Considering strategies that shift away from a deficit perspective to one that focuses on patient/caregiver assets and resources Employing activation and motivational interviewing strategies for patient/ caregivers to help them feel comfortable about voicing and participating in discussions related to appropriate intervention strategies Providing learning exchanges geared to researchers about illness and sociocultural perspectives that apply an asset-based framework CBPR fosters co-learning and capacity building Researchers and patient stakeholders work together to help build community capacity Patient representatives or organizations may have limited experiences in developing or understanding the research process Researchers may be unfamiliar with how to identify contexts and dynamics that impact stakeholder lived experience with the clinical outcome (s) of interest Conduct learning exchanges in which both researchers and stakeholders provide expertise relevant to the research process. Examples include research methods training for stakeholders, and coalition- and consensus-building for researchers Balance between knowledge generation and benefit for community partners Researchers and patient stakeholders identify at the outset their expectations goals of the research to be conducted and determine the practical benefit for patient stakeholders in engaging research Stakeholders may feel unsatisfied with traditional RCT study design (e.g., receiving placebo or usual care) Researchers may be unfamiliar with research methods outside of the RCT standard that may be more appropriate or relevant to stakeholders Explore study designs that balance scientific rigor with benefits to participants and perceived community concerns of the ethics of doing research (such as depriving a group of individuals from a beneficial intervention). Examples include comparative-effectiveness trials that compare two or more relevant strategies, cross-over control or wait-list control designs CBPR focuses on problems of local relevance—communities determine the priorities Stakeholders identify problem or works with researcher to identify problem Stakeholders may be interested in outcomes or measures beyond the research project Researchers may feel threatened by potential “scope creep” or challenged by balancing scientific rigor with relevance of research to stakeholders Conduct a multi-method formative assessment that includes input from these stakeholders in the design, evaluation, and interpretation of findings and contextualizing these findings in the experiences of patients/caregivers CBPR occurs through a cyclical and iterative process Goal of the research is not only about advancing knowledge but includes a process that allows for reflection, quality improvement, and actions related to improving engagement and sustainability that includes ongoing assessments of successes and challenges Stakeholders may have limited experience in participating in research and may need orientation and training related to their role in research and feel empowered to share their perspectives of what works and doesn’t work Researchers may have limited experience to doing formative research or utilizing other methodologies that can help understand why a program and/or partnership is struggling. Researchers may also be concerned that this cyclical and iterative process is too labor and time intensive Work with all stakeholders involved to identify measurable immediate successes and processes to identify challenges and potential solutions CBPR disseminates results to all partners and involves them in wider dissemination of results Data is shared, researchers and patient stakeholders decide its use and dissemination Stakeholders may be interested in dissemination that has immediate, practical benefit and place lower prioritization on dissemination via peer-reviewed publications Researchers may lack the skills to understand how to articulate or convey scientific information in a manner accessible and meaningful to lay audiences Disseminate findings through multiple vehicles and strategies, including patient forums, newspaper articles, policy briefs, monographs, community forums, patient education tools, provider education resources, and peer-reviewed articles CBPR involves a long-term process and commitment to sustainability Sustainability is an ongoing goal to strive towards Stakeholders may have prior experiences working with researchers that disappear after data collection Intended research may be limited by project periods or funding cycles Place sustainability as a goal at the outset of the project and consider potential strategies for sustaining efforts throughout the life of the research Community-based participatory research (CBPR) principle Patient-centered outcomes research (PCOR) strategy Potential challenges for consideration Practical applications of PCOR strategies using CBPR principles Stakeholders Researchers Collaborative, equitable partnership in all phases of research— from identifying priorities to design to intervention development and implementation to evaluation to dissemination Research with patients as full partner Researcher and patient stakeholders share control equally Distrust of researchers and their agendas Varying perceptions of equitable power-sharing Lack of established contacts with key community-based organizations or individual champions from the target community Lack of history of working with the community and understanding of community politics and experiences Include a patient representative or patient advocacy group as co-leads of an application Involve patient stakeholders input fully in the decision-making, development, implementation, evaluation and dissemination process Community is the unit of identity—focus is on the community People as participants and collaborators Fostering ownership that the project is aligned with patient/caregiver/ target community concerns or priorities Engaging the right patient stakeholders and ensuring that the representation is reflective of patient, caregiver, and other stakeholder priorities and interests Create a stakeholder board that represents different perspectives of the patient community Develop multiple strategies for gaining input and perspectives from diverse constituents/stakeholders CBPR builds on strengths and resources of community Uses an asset-based approach to developing interventions building on assets in patient, caregivers, family, and provider settings Need to activate or empower patients and caregivers to voice their concerns, challenges, and strategies that they perceive will build on their existing resources and assets Moving researchers from a biomedical focus to contextualizing illness within cultural, social, and family norms Considering strategies that shift away from a deficit perspective to one that focuses on patient/caregiver assets and resources Employing activation and motivational interviewing strategies for patient/ caregivers to help them feel comfortable about voicing and participating in discussions related to appropriate intervention strategies Providing learning exchanges geared to researchers about illness and sociocultural perspectives that apply an asset-based framework CBPR fosters co-learning and capacity building Researchers and patient stakeholders work together to help build community capacity Patient representatives or organizations may have limited experiences in developing or understanding the research process Researchers may be unfamiliar with how to identify contexts and dynamics that impact stakeholder lived experience with the clinical outcome (s) of interest Conduct learning exchanges in which both researchers and stakeholders provide expertise relevant to the research process. Examples include research methods training for stakeholders, and coalition- and consensus-building for researchers Balance between knowledge generation and benefit for community partners Researchers and patient stakeholders identify at the outset their expectations goals of the research to be conducted and determine the practical benefit for patient stakeholders in engaging research Stakeholders may feel unsatisfied with traditional RCT study design (e.g., receiving placebo or usual care) Researchers may be unfamiliar with research methods outside of the RCT standard that may be more appropriate or relevant to stakeholders Explore study designs that balance scientific rigor with benefits to participants and perceived community concerns of the ethics of doing research (such as depriving a group of individuals from a beneficial intervention). Examples include comparative-effectiveness trials that compare two or more relevant strategies, cross-over control or wait-list control designs CBPR focuses on problems of local relevance—communities determine the priorities Stakeholders identify problem or works with researcher to identify problem Stakeholders may be interested in outcomes or measures beyond the research project Researchers may feel threatened by potential “scope creep” or challenged by balancing scientific rigor with relevance of research to stakeholders Conduct a multi-method formative assessment that includes input from these stakeholders in the design, evaluation, and interpretation of findings and contextualizing these findings in the experiences of patients/caregivers CBPR occurs through a cyclical and iterative process Goal of the research is not only about advancing knowledge but includes a process that allows for reflection, quality improvement, and actions related to improving engagement and sustainability that includes ongoing assessments of successes and challenges Stakeholders may have limited experience in participating in research and may need orientation and training related to their role in research and feel empowered to share their perspectives of what works and doesn’t work Researchers may have limited experience to doing formative research or utilizing other methodologies that can help understand why a program and/or partnership is struggling. Researchers may also be concerned that this cyclical and iterative process is too labor and time intensive Work with all stakeholders involved to identify measurable immediate successes and processes to identify challenges and potential solutions CBPR disseminates results to all partners and involves them in wider dissemination of results Data is shared, researchers and patient stakeholders decide its use and dissemination Stakeholders may be interested in dissemination that has immediate, practical benefit and place lower prioritization on dissemination via peer-reviewed publications Researchers may lack the skills to understand how to articulate or convey scientific information in a manner accessible and meaningful to lay audiences Disseminate findings through multiple vehicles and strategies, including patient forums, newspaper articles, policy briefs, monographs, community forums, patient education tools, provider education resources, and peer-reviewed articles CBPR involves a long-term process and commitment to sustainability Sustainability is an ongoing goal to strive towards Stakeholders may have prior experiences working with researchers that disappear after data collection Intended research may be limited by project periods or funding cycles Place sustainability as a goal at the outset of the project and consider potential strategies for sustaining efforts throughout the life of the research aStakeholder: patient, family, community-based social service agencies, practice/implementation sites, providers, public agencies, funders, hospital and health systems, policy makers. View Large In regards to fostering joint ownership in the research process, from the identification of research priorities through the dissemination of findings, PCOR can adapt numerous strategies utilized by CBPR researchers to ensure ownership mechanisms are integrated in each phase of research. For example, including patient representatives and creating stakeholder boards that represent different perspectives from the patient community are components of CBPR studies addressing health issues ranging from diabetes management, asthma prevention, and promoting breast and cervical cancer screening. Importantly, CBPR studies create advisory boards with diverse representation, including patient perspectives and those of healthcare and social service providers, caretakers, peers, and community leaders [38, 46]. Though PCOR has prioritized advancing patient and family stakeholder initiatives, the incorporation of diverse perspectives from non-patients who have insider knowledge on patient populations, and including providers and healthcare systems and organizations, may be an important method of advancing PCOR and informing successful uptake into practice. Several core CBPR themes address the importance of community-framed and community-driven identification of needs at the local level and balancing data generation and research with action-oriented solutions and programming efforts. In CBPR studies, clearly identifying “community”—whether defined by geographic area or race, ethnicity, age, gender, sexual orientation, health system membership, or language—is an important component of ensuring the research agenda is community-driven [47]. For PCOR, the “community” of interest has already been identified as patients, families, and other caregivers. However, CBPR studies have provided insight into the importance of ensuring and integrating the diversity of community voices. In conducting PCOR, then, it is important for researchers to consider patient stakeholders not only by disease state (by which many PCOR studies engage patients currently) but also by other dimensions such as race, English language proficiency, or immigration status—dimensions which may greatly impact the identification of patient priorities and outcomes. Relatedly, by drawing upon the core CBPR theme of community members determining priorities, PCOR studies have the opportunity to advance our understanding of “patient-driven” outcomes beyond those that are clinical or physiological in nature. Recent studies on the integration of patient perspective into PCOR “big data” initiatives, for example, have tended to focus on the potential to generate patient-outcomes data that are clinical or physiological in nature (e.g., patient data that can be obtained through “wearable” devices such as pedometers), while largely neglecting outcomes such as quality of life or social outcomes that may be of equal importance to patient stakeholders [17–19]. Many CBPR studies, driven by community members’ desire to address these issues, assess the impact of interventions on outcomes germane to patients and their families that include quality of life, daily functioning, social connectedness, and self-efficacy. In terms of balancing research with action, CBPR studies have demonstrated how community stakeholders can work with researchers to ensure that research designs remain rigorous, such as comparative effectiveness trials or cross-over designs. Given that a central focus of PCOR is the use of large-scale clinical data systems for research, there are opportunities to develop innovative study designs that maximize patient benefit, minimize patient research burden, while maintaining research rigor [17]. In regards to CBPR studies that have demonstrated methods of readily translating research into action through policy or program implementation, PCOR investigators can consider strategies such as the use of patient-reported outcome data for real-time clinical improvements in healthcare settings [17]. Moreover, using this approach can optimize uptake and adoption into clinical and public health practice. The idea of reciprocal capacity-building is an essential component of CBPR study, and stems from the notion that as equal partners in the research process, both community and academic partners have unique strengths and contributions that can be harnessed, as well as learning needs [7, 38]. In CBPR studies, such capacity-building has been operationalized through the development of learning exchanges between academics and community partners [7]. Further, CBPR studies operate from an assets-based approach, and have utilized strategies such as community and asset mapping to determine local strengths that can be leveraged for study design, implementation, dissemination, and program sustainability. In the context of PCOR, patient stakeholders may benefit from capacity-building in the use and scope of “big data” initiatives [19]; conversely, researchers may need a better understanding of contextual factors—such as familial, neighborhood, and cultural influence—that impact patient health, both negatively and positively [4]. Finally, a key theme in CBPR is that it is cyclical in nature. Rather than research generation being an end-result, ongoing dissemination is built into the process, and this dissemination is used to inform the sustainability, and ultimately, scalability of proposed solutions [4, 48]. Napoles et al. [6] have suggested that successful dissemination and implementation of evidence-based interventions, especially within communities with the greatest health disparities, begins with the translation of interventions based on a CBPR approach, ultimately to facilitate social action or change within a specific community. PCOR, using principles of CBPR to inform dissemination, will result in programs or interventions that effectively translate the practice base and have lasting health impacts inspired and evaluated in part by the community they serve. CBPR maintains a commitment to dissemination through multiple channels to diverse stakeholders, and includes examples such as hosting community forums, disseminating policy briefs of findings, and working with media to highlight research results. Similarly, PCOR efforts such as PCOR-net already emphasize the dissemination of information from patient-centered channels such as social media. Through these formal and informal channels of dissemination, new questions can often emerge that then inform future directions for research. DISCUSSION The description of strategies and examples of how CBPR principles can be applied to patient and family, as well as other stakeholder engagement activities, is intended to reflect what we understand is a high bar for community engagement. Effective community and stakeholder engagement enriches the implementation and relevance of research by utilizing the experience of those most connected to the community of interest and results in the creation of more sustainable and translatable interventions and research [20]. For example, a recent study describing the PATIENTS initiative, focused on improving PCOR methods and addressing health disparities using a 10-step CER (comparative effectiveness research)/PCOR framework. The researchers described the general weaknesses of traditional research models in translating findings to the community and the need to address “the lack of infrastructure to train researchers in methods for meaningful engagement to incorporate the voices of the patient, community, and other healthcare stakeholders” [49] in order to adequately address the complex issues of health disparities. Integrating a multi-disciplinary team that includes CBPR researchers with their expertise in stakeholder identification and engagement and their broad understanding of community as “those who share a unit of identity” [50] is likely to be a key strategy in addressing this need and developing robust and meaningful outcomes to address health disparities affecting communities. We appreciate that there is a spectrum of engagement and that each research protocol may differ in the level of patient and family engagement. For researchers and academic-community partnerships looking for a framework to engage patients, families, and including other stakeholders in research, we believe that using CBPR principles can be instructive. PCORI’s recently created patient engagement rubric reflects many of the core CBPR principles discussed in this manuscript [15]. By highlighting the specific ways in which these CBPR principles can be translated for use in engaging patients and families, this article aims to equip research partnerships with concrete strategies for incorporating CBPR principles into their patient-centered research and practice. Compliance with Ethical Standards Conflict of Interest: Simona C. Kwon, Shiv Darius Tandon, Nadia Islam, Lindsey Riley, and Chau Trinh-Shevrin declare that they have no conflict of interest. Ethical Approval: This article does not contain any studies with human participants or animals performed by any of the authors. Informed Consent: This article does not contain any studies with human participants performed by any of the authors. Study Findings: The findings have not been previously published and the manuscript is not being simultaneously submitted elsewhere. Previous Presentations: “Understanding Patient and Stakeholder Engagement in Patient Centered Outcomes Research,” co-presented on March 28, 2014 at NYU School of Medicine by Chau Trinh-Shevrin, DrPH, and S. Darius Tandon, PhD. Primary Data: The authors have full control of all primary data and agree to allow the journal to review the data if requested. Acknowledgments The authors wish to thank Laurel Leslie, MD MPH, Stella Yi, PhD MPH, Rebecca Park, Nancy Van Devanter, DrPH RN, and Mary Northridge, PhD MPH for reviewing drafts of this manuscript and providing useful feedback. Lindsey Riley has a new affiliation as Associate Director of Research Partnerships at The Michael J. Fox Foundation for Parkinson’s Research. This study was funded by grants 2P60MD000538 (National Institute of Minority Health and Disparities), U48DP005008 (Centers for Disease Control and Prevention), UL1TR001445 (National Center for Advancing Translational Sciences). References 1. Bell J , Standish M . Communities and health policy: a pathway for change . Health Aff (Millwood) . 2005 ; 24 ( 2 ): 339 – 342 . Google Scholar CrossRef Search ADS PubMed 2. Cargo M , Mercer SL . The value and challenges of participatory research: strengthening its practice . Annu Rev Public Health . 2008 ; 29 : 325 – 350 . Google Scholar CrossRef Search ADS PubMed 3. Mercer S , Green L . Federal funding and support for participatory research in public health and health care . In: Minkler MWN , ed. Community based participatory research for health: process to outcomes . 2nd ed . San Francisco, CA : Jossey-Bass ; 2008 : 399 – 406 . 4. Wallerstein N , Duran B . Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity . Am J Public Health . 2010 ; 100 ( Suppl 1 ): S40 – S46 . Google Scholar CrossRef Search ADS PubMed 5. Mullins CD , Abdulhalim AM , Lavallee DC . Continuous patient engagement in comparative effectiveness research . JAMA . 2012 ; 307 ( 15 ): 1587 – 1588 . Google Scholar CrossRef Search ADS PubMed 6. Nápoles AM , Santoyo-Olsson J , Stewart AL . Methods for translating evidence-based behavioral interventions for health-disparity communities . Prev Chronic Dis . 2013 ; 10 : E193 . Google Scholar CrossRef Search ADS PubMed 7. Chau TS , Islam N , Tandon D , Ho-Asjoe H , Rey M . Using community-based participatory research as a guiding framework for health disparities research centers . Prog Community Health Partnersh . 2007 ; 1 ( 2 ): 195 – 205 . Google Scholar CrossRef Search ADS PubMed 8. Meade CD , Menard JM , Luque JS , Martinez-Tyson D , Gwede CK . Creating community-academic partnerships for cancer disparities research and health promotion . Health Promot Pract . 2011 ; 12 ( 3 ): 456 – 462 . Google Scholar CrossRef Search ADS PubMed 9. D’Alonzo KT . Getting started in CBPR: lessons in building community partnerships for new researchers . Nurs Inq . 2010 ; 17 ( 4 ): 282 – 288 . Google Scholar CrossRef Search ADS PubMed 10. Hasnain-Wynia R , Beal AC . Role of the patient-centered outcomes research institute in addressing disparities and engaging patients in clinical research . Clin Ther . 2014 ; 36 ( 5 ): 619 – 623 . Google Scholar CrossRef Search ADS PubMed 11. Concannon TW , Meissner P , Grunbaum JA et al. A new taxonomy for stakeholder engagement in patient-centered outcomes research . J Gen Intern Med . 2012 ; 27 ( 8 ): 985 – 991 . Google Scholar CrossRef Search ADS PubMed 12. Patient-Centered Outcomes Research Institute . PCORI Engagement Rubric . 2016 . Available at: http://www.pcori.org/sites/default/files/Engagement-Rubric.pdf. Accessibility verified April 3, 2017 . 13. Patient Protection and Affordable Care Act, 124, §6301 and 10602 . 2010 . Available at: https://legcounsel.house.gov/Comps/Patient%20Protection%20And%20Affordable%20Care%20Act.pdf. Accessibility verified November 20, 2017 . 14. Patient-Centered Outcomes Research Institute . About Us . 2014 . Available at: http://www.pcori.org/about-us. Accessibility verified March 25, 2014 . 15. Patient-Centered Outcomes Research Institute . PCORI Patient and Family Engagement Rubric . 2014 . Available at: http://www.pcori.org/assets/2014/02/PCORI-Patient-and-Family-Engagement-Rubric.pdf. Accessibility verified March 25, 2014 . 16. Sheridan S , Schrandt S , Forsythe L , Hilliard TS , Paez KA ; Advisory Panel on Patient Engagement (2013 inaugural panel) . The PCORI engagement rubric: promising practices for partnering in research . Ann Fam Med . 2017 ; 15 ( 2 ): 165 – 170 . Google Scholar CrossRef Search ADS PubMed 17. Howie L , Hirsch B , Locklear T , Abernethy AP . Assessing the value of patient-generated data to comparative effectiveness research . Health Aff (Millwood) . 2014 ; 33 ( 7 ): 1220 – 1228 . Google Scholar CrossRef Search ADS PubMed 18. Longhurst CA , Harrington RA , Shah NH . A ‘green button’ for using aggregate patient data at the point of care . Health Aff (Millwood) . 2014 ; 33 ( 7 ): 1229 – 1235 . Google Scholar CrossRef Search ADS PubMed 19. Fleurence RL , Beal AC , Sheridan SE , Johnson LB , Selby JV . Patient-powered research networks aim to improve patient care and health research . Health Aff (Millwood) . 2014 ; 33 ( 7 ): 1212 – 1219 . Google Scholar CrossRef Search ADS PubMed 20. Drahota A , Meza RD , Brikho B et al. Community-academic partnerships: a systematic review of the state of the literature and recommendations for future research . Milbank Q . 2016 ; 94 ( 1 ): 163 – 214 . Google Scholar CrossRef Search ADS PubMed 21. Brett JSS , Mockford C , Seers K , Herron-marx S , Bayliss H. The PIRICOM Study: A systematic review of the conceptualisation, measurement, impact and outcomes of patients and public involvement in health and social care research . Warwick, UK : University of Warwick ; 2010 . 22. Mockford C , Staniszewska S , Griffiths F , Herron-Marx S . The impact of patient and public involvement on UK NHS health care: a systematic review . Int J Qual Health Care . 2012 ; 24 ( 1 ): 28 – 38 . Google Scholar CrossRef Search ADS PubMed 23. Nilsen ES , Myrhaug HT , Johansen M , Oliver S , Oxman AD . Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material . Cochrane Database Syst Rev . 2006 ;( 3 ): CD004563 . 24. Domecq JP , Prutsky G , Elraiyah T et al. Patient engagement in research: a systematic review . BMC Health Serv Res . 2014 ; 14 : 89 . doi: 10.1186/1472-6963-14-89 . Google Scholar CrossRef Search ADS PubMed 25. Minogue V , Girdlestone J . Building capacity for service user and carer involvement in research: the implications and impact of best research for best health . Int J Health Care Qual Assur . 2010 ; 23 ( 4 ): 422 – 435 . Google Scholar CrossRef Search ADS PubMed 26. Ali K , Roffe C , Crome P . What patients want: consumer involvement in the design of a randomized controlled trial of routine oxygen supplementation after acute stroke . Stroke . 2006 ; 37 ( 3 ): 865 – 871 . Google Scholar CrossRef Search ADS PubMed 27. Morris MC , Nadkarni VM , Ward FR , Nelson RM . Exception from informed consent for pediatric resuscitation research: community consultation for a trial of brain cooling after in-hospital cardiac arrest . Pediatrics . 2004 ; 114 ( 3 ): 776 – 781 . Google Scholar CrossRef Search ADS PubMed 28. Légaré F , Boivin A , van der Weijden T et al. Patient and public involvement in clinical practice guidelines: a knowledge synthesis of existing programs . Med Decis Making . 2011 ; 31 ( 6 ): E45 – E74 . Google Scholar CrossRef Search ADS PubMed 29. Edwards V , Wyatt K , Logan S , Britten N . Consulting parents about the design of a randomized controlled trial of osteopathy for children with cerebral palsy . Health Expect . 2011 ; 14 ( 4 ): 429 – 438 . Google Scholar CrossRef Search ADS PubMed 30. Jones L , Wells K . Strategies for academic and clinician engagement in community-participatory partnered research . JAMA . 2007 ; 297 ( 4 ): 407 – 410 . Google Scholar CrossRef Search ADS PubMed 31. VanDevanter N , Kwon S , Sim SC , Chun K , Trinh-Shevrin C ; B Free CEED Coalition . Evaluation of community-academic partnership functioning: center for the elimination of hepatitis B health disparities . Prog Community Health Partnersh . 2011 ; 5 ( 3 ): 223 – 233 . Google Scholar CrossRef Search ADS PubMed 32. Guarino P , Elbourne D , Carpenter J , Peduzzi P . Consumer involvement in consent document development: a multicenter cluster randomized trial to assess study participants’ understanding . Clin Trials . 2006 ; 3 ( 1 ): 19 – 30 . Google Scholar CrossRef Search ADS PubMed 33. Koops L , Lindley RI . Thrombolysis for acute ischaemic stroke: consumer involvement in design of new randomised controlled trial . BMJ . 2002 ; 325 ( 7361 ): 415 . Google Scholar CrossRef Search ADS PubMed 34. Boote J , Baird W , Beecroft C . Public involvement at the design stage of primary health research: a narrative review of case examples . Health Policy . 2010 ; 95 ( 1 ): 10 – 23 . Google Scholar CrossRef Search ADS PubMed 35. Forbes LJ , Nicholls CM , Linsell L , Graham J , Tompkins C , Ramirez AJ . Involving users in the design of a randomised controlled trial of an intervention to promote early presentation in breast cancer: qualitative study . BMC Med Res Methodol . 2010 ; 10 : 110 . doi: 10.1186/1471-2288-10-110 . Google Scholar CrossRef Search ADS PubMed 36. Salimi Y , Shahandeh K , Malekafzali H et al. Is Community-based participatory research (CBPR) useful? A systematic review on papers in a decade . Int J Prev Med . 2012 ; 3 ( 6 ): 386 – 393 . Google Scholar PubMed 37. Viswanathan M , Ammerman A , Eng E et al. Community-Based participatory research: assessing the evidence. Evidence report/technology assessment No. 99 . Rockville, MD : AHRQ Publication 04-E022-2 .; 2004 . 38. Minkler M . Linking science and policy through community-based participatory research to study and address health disparities . Am J Public Health . 2010 ; 100 ( Suppl 1 ): S81 – S87 . Google Scholar CrossRef Search ADS PubMed 39. De las Nueces D , Hacker K , DiGirolamo A , Hicks LS . A systematic review of community-based participatory research to enhance clinical trials in racial and ethnic minority groups . Health Serv Res . 2012 ; 47 ( 3 Pt 2 ): 1363 – 1386 . Google Scholar CrossRef Search ADS PubMed 40. Washington AE , Lipstein SH . The patient-centered outcomes research institute–promoting better information, decisions, and health . N Engl J Med . 2011 ; 365 ( 15 ): e31 . Google Scholar CrossRef Search ADS PubMed 41. Wells K , Jones L . “Research” in community-partnered, participatory research . JAMA . 2009 ; 302 ( 3 ): 320 – 321 . Google Scholar CrossRef Search ADS PubMed 42. Kellogg Health Scholars. Kellogg Health Scholars Community Track. Available at: https://kellogghealthscholars.org/about/community.php. Accessibility verified November 20, 2017 . 43. Sofolahan-Oladeinde Y , Mullins CD , Baquet CR . Using community-based participatory research in patient-centered outcomes research to address health disparities in under-represented communities . J Comp Eff Res . 2015 ; 4 ( 5 ): 515 – 523 . Google Scholar CrossRef Search ADS PubMed 44. Israel BA , Schulz AJ , Parker EA , Becker AB , Allen A , Gusman JR . Critical issues in developing and following community-based participatory research principles . In: Minkler M & Wallerstein N , eds. Community-based participatory research for health . San Francisco, CA : Jossey-Bass ; 2003 : 56 – 73 . 45. Kania J , Kramer M . Collective impact . Stanford Social Innovation Review . 2011 ; 9 ( 1 ): 36 – 41 . 46. Rideout C , Gil R , Browne R et al. Using the Delphi and snow card techniques to build consensus among diverse community and academic stakeholders . Prog Community Health Partnersh . 2013 ; 7 ( 3 ): 331 – 339 . Google Scholar CrossRef Search ADS PubMed 47. Minkler M , Wallerstein N. Community-based participatory research for health . San Francisco, CA : Jossey-Bass ; 2003 . 48. Hacker K , Tendulkar SA , Rideout C et al. Community capacity building and sustainability: outcomes of community-based participatory research . Prog Community Health Partnersh . 2012 ; 6 ( 3 ): 349 – 360 . Google Scholar CrossRef Search ADS PubMed 49. Huang J , Lipman PD , Daniel Mullins C . Bridging the divide: building infrastructure to support community-academic partnerships and improve capacity to conduct patient-centered outcomes research . Transl Behav Med . 2017 ; 7 ( 4 ): 773 – 782 . doi: 10.1007/s13142-017-0487-z . Google Scholar CrossRef Search ADS PubMed 50. Burke JG , Jones J , Yonas M et al. PCOR, CER, and CBPR: alphabet soup or complementary fields of health research? Clin Transl Sci . 2013 ; 6 ( 6 ): 493 – 496 . Google Scholar CrossRef Search ADS PubMed 51. International Association for Public Participation . IAP2’s Public Participation Spectrum . 2014 . Available at: http://c.ymcdn.com/sites/www.iap2.org/resource/resmgr/foundations_course/IAP2_P2_Spectrum_FINAL.pdf. Accessibility verified April 3, 2017 . © Society of Behavioral Medicine 2017 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Translational Behavioral Medicine Oxford University Press

Applying a community-based participatory research framework to patient and family engagement in the development of patient-centered outcomes research and practice

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Abstract

Abstract There has been increasing recognition of the need to engage patients, families, and other patient stakeholders in research. This article seeks to provide understanding and examples of how to apply core principles of community-based participatory research (CBPR) in developing patient-centered outcomes research (PCOR) that can impact clinical and public health practice. Authors review CBPR principles and demonstrate how to translate them into effective PCOR strategies. Common themes of CBPR principles and PCOR strategies are related to: (a) fostering joint ownership in the identification of health priorities, the development and evaluation of research strategies and their design, and the dissemination of findings; (b) a keen recognition and appreciation for the importance of stakeholder-driven priorities, research, and solutions; (c) building capacity of both stakeholders and researchers to engage in research collaboratively; and (d) recognizing that conducting the research is not the endpoint but continues on with a commitment to dissemination, spread, adoption and sustainability. The authors highlight the specific strategies in which these CBPR principles can be translated for use in engaging patients and families, and including other stakeholders such as care providers, community partner organizations, health systems, and insurers, in the research process to ensure the development of PCOR. Implications Practice: Applying a community-based participatory research (CBPR) approach to patient-centered outcomes research (PCOR) facilitates meaningful patient and family engagement, the development of clinical and public health practices relevant to “patient community” needs, and sustainable outcome-oriented research. Policy: Policymakers, health systems and organizations need to be invested in PCOR in order to identify collaborative and sustainable clinical and public health practices that can benefit all patient communities. Research: To achieve clinical and public health impact in PCOR, researchers need to consider applying principles of community-based participatory research and engaging diverse stakeholders. INTRODUCTION In the last two decades, there has been increasing recognition of the need to engage communities in research. Due to the poor uptake and adoption of evidence-based interventions in real world settings, there has been a clear shift away from research conducted in tightly controlled environments, and towards meaningful and sustainable interventions that engage community stakeholders and are tested in real world settings [1–5]. The complexity of real world clinical and community settings requires stakeholder engagement early on in the development and implementation process and later in the evaluation and dissemination process to ensure improved translation of efficacy and effectiveness into adoption and practice. Collaboration with stakeholders provides detailed knowledge of individual community needs, resources, and cultural norms and expectations thus enhancing the likelihood of an intervention’s success and sustainability within a community [6]. Community-based participatory research (CBPR)—a form of community-engaged research that actively involves community stakeholders throughout the research process—has increasingly been looked to as a framework for facilitating collaboration between community stakeholders and academic researchers [4, 7–9]. CBPR’s focus on “community ownership” is designed to improve the adoption, maintenance and sustainability of evidence-based interventions, especially for populations who experience health disparities and may distrust the health care system or have limited resources to implement interventions. By engaging the community throughout the translation and implementation process, exploring best practices and community capacity building, and providing culturally and linguistically adapted interventions, CBPR methods have the potential to enhance the success of interventions within a real world setting [6]. The increasing attention to engagement has also shifted emphasis from communities to individual patients and their caregivers/families with increased calls for both patient-centered and family-centered approaches to population health, embodied in the establishment of the Patient Centered Outcomes Research Institute (PCORI) [10]. Patient engagement strategies include reaching out to individuals with lived experiences of a specific illness and the caregivers/family members who are involved in caring for these individuals. With recent health care reform initiatives, there is also consideration of involving a broader definition of stakeholder engagement and defining the taxonomy of what constitutes stakeholders [11]. In addition to patients, patient advocacy groups, families, and other caregivers, this broader definition of stakeholders has grown to include providers, payers, clinicians, hospitals and health systems, and policy makers [12]. Despite the increased call for stakeholder engagement in research, many researchers are struggling with how best to engage a wide and diverse group of stakeholders that ensures research is patient-centered, methodologically rigorous in its approach, generalizable to different populations and settings, and enhances spread and adoption into clinical and public health practice, thus benefiting communities in need. Given CBPR’s emphasis on involving a diverse set of stakeholders in the research process, including patients, caregivers, and family members, we believe the utilization of core CBPR principles can assist researchers looking to develop effective and efficient patient-centered research. As such, the purpose of this article is to provide understanding and examples of how to apply core CBPR principles in developing patient-centered outcomes research (PCOR) that actively engages and with the long-term goal to impact health outcomes and care to benefit and reach patients and families. THE IMPACT OF PCORI ON DEFINING PATIENT CENTEREDNESS IN CLINCAL RESEARCH AND PCOR In 2010, with the passage of the Patient Protection and Affordable Care Act (PPACA), PCORI was formally authorized and created [13]. PCORI’s mission is to help “people make informed health care decisions, and improve health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community [14].” With the establishment of PCORI, there was an unprecedented opportunity to further strengthen the consumer voice and ensure that patient and family perspectives were integrated within health outcomes research. In doing so, PPACA catalyzed national efforts for changing the way health services research was conducted, shifting greater priority on outcomes that were patient-centered and focused on issues and concerns germane to patients. Measures such as quality of life, self-determination, self-efficacy, and autonomy, are now becoming of equal value in research as those variables that have long-been considered as primary outcomes, such as, improved medication adherence and clinical outcomes. The funding landscape and interest has shifted considerably as a consequence of PPACA, the formal establishment of PCORI, and the level and criteria of review adhered by PCORI for genuine patient and family engagement in research. To guide these efforts PCORI has developed a patient/stakeholder engagement rubric that is used to guide researchers and reviewers on what is “good” patient-engaged research [15]. This rubric was designed to be a “practical resource that distills and prioritizes information from promising practices intended to systematically bring stakeholders into the research process in the most impactful way” during the three general phases of research: planning, conduct, and dissemination [16]. It includes potential activities for each phase, as well as real world examples of each. It was designed using a three-step process: (a) a review of research applications to develop a draft rubric; (b) the refinement of the draft rubric by the Advisory Panel on Patient Engagement, which consisted of “patient, caregiver, patient advocate, industry, clinician, and researcher representatives;” and (c) final review by senior PCOR engagement staff [16]. The rubric is intended to be a “living document” that is open to change as more knowledge is acquired and more research completed [16]. There is renewed interest by researchers and scholars regarding the most effective ways to incorporate patient perspective and patient-driven outcomes research into PCOR “big data” and other initiatives [17–19]; however, such analyses have failed to provide bigger-picture strategies for ways in which to meaningfully engage patient stakeholders throughout the research process. Meaningful collaboration with patient stakeholders, for example, can provide information about the patient context, allowing researchers to tailor interventions and strategies to maximize feasibility and increase the external validity [20]. CHALLENGES IN PATIENT AND FAMILY ENGAGEMENT IN RESEARCH Although there has been recent increased interest in patient and family engagement in healthcare research, there is a dearth of information related to the appropriate tools for measurement and evaluation, including economic analyses of associated costs [21–23]. Additionally, there remains a poor understanding of best practices for patient and family engagement due to a general lack of comparative analytic studies. In a recent systematic review, Domecq et al. [24] highlighted the need for comparative evidence to support the value of patient engagement to both researchers and potential stakeholders. Another pressing question raised by the growing body of research around patient and family engagement is how best to address a number of potential challenges incurred when employing a research approach that calls for active and equitable input from stakeholders outside academic medical centers. A commonly reported barrier for researchers involved in patient and family engagement is the extra time required by all parties involved to establish, develop, and maintain relationships and trust required for a truly fruitful partnership [24]. There also exists a high likelihood that both researchers and stakeholders require capacity building in several areas—coalition building and qualitative research methods for the former [25], and training in traditional research methods for the latter [26, 27]. Additionally, researchers may not have available funding for the types of personnel, training, and activities that may be required, which include staff time, events, incentives, etc. As Minogue et al. [25] states, effective engagement of stakeholders throughout all phases of the research process “cannot be cost neutral,” and therefore available funding mechanisms must consider these activities as an integral project deliverable. Domecq et al. also noted in their review that patient and family engagement in the research process may potentially involve “scope creep” or competing priorities, in that the researcher’s agenda and priorities are likely different from those of patients, families, and/or other stakeholders [24, 25, 28, 29]. This particular phenomena can be a challenge to the researcher’s usual position within the hierarchical structure of academia, as well as to the intensive focus placed upon randomized controlled trial (RCT) designs as the gold standard used within the field [30]. In order to help reconcile these competing priorities, regular, well-structured meetings and discussions with stakeholders should occur to establish effective channels of communication [20]. Memorandums of Understanding (MOUs) can be collaboratively developed to formalize partnerships and clearly define roles, responsibilities and activities of all stakeholders [7]. One evaluation of a CBPR study described the importance of a “partnership retreat” in which partners examined respective priorities [31]. An additional challenge to validity when engaging stakeholders is the potential for selection bias when identifying and recruiting individuals throughout the research process. There is a high potentiality that those who participate in pre-trial design activities may be more intrinsically motivated to participate, and therefore not representative of the intended patient population as a whole [26, 28, 32–35]. RATIONALE FOR APPLYING A CBPR FRAMEWORK TO ADVANCE PATIENT AND FAMILY ENGAGEMENT Given the numerous challenges associated with patient engagement in research, how might a CBPR approach advance the PCOR agenda? First, the core principles of CBPR, with its focus on engaging community stakeholders throughout the research process to develop action-oriented research, is both ideologically and practically congruous with PCOR’s central tenets. Similarly, PCOR aims to engage diverse groups of patients, family members, and caregivers in prioritizing research questions, and participating in the research process, including evaluating and disseminating results. PCORI has also advanced this further by endorsing patient stakeholder participation in the leadership and governance of national and local PCOR initiatives [19]. Second, CBPR is rooted in a several-decades long evidence base demonstrating improved health outcomes [36, 37], and has a vibrant community of scholars and practitioners that offer practical guides for the implementation of CBPR studies, which can be leveraged by PCOR researchers [4, 38]. Finally, CBPR has been especially successful in engaging socioeconomically and racially/ethnically diverse communities [7, 39]. A central concern of PCOR efforts is that those patients most likely to be active participants in the research process may not reflect the diversity of the U.S. healthcare system’s patient population [40]; thus, the CBPR framework may offer strategies for engagement with diverse populations. USING CBPR PRINCIPLES TO ADVANCE PATIENT, FAMILY, AND STAKEHOLDER ENGAGEMENT RESEARCH AND PRACTICE The principles underlying strategies for community engagement, including CBPR, can inform strategies for advancing patient, family, and other stakeholder engagement. Community engagement falls along a defined spectrum from little engagement to very participatory and/or partnered approaches [30, 41]. The spectrum of community-engaged research can generally be classified under three major categories: (a) community-placed/based research with no community input (e.g., researcher conducts research in the community but does not engage community at any level of research); (b) community-placed/based research with some community input (e.g., researcher conducts research in the community and limits community role to help recruiting participants into the study through existing networks and other community resources); and (c) CBPR with community input. CBPR represents the gold standard for engaging stakeholders in community-engaged research because CBPR is “a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings” [42]. Similarly, for PCOR, patient, families, and other stakeholder (e.g., clinicians, payers, hospitals and health care systems, and policy makers) [16] engagement also falls within a wide spectrum of involvement in research, from very little involvement, such as through informants and consultation, to very involved through collaboration and empowerment (Fig. 1). CBPR methods can help to strengthen processes for patient, family, and stakeholder engagement [43] that reflect genuine collaboration and moves towards empowerment of patients, their caregivers, families, and other stakeholders, such as community-based social service agencies serving the target community, in the research process in ways that are meaningful and informs sustainability. Fig 1 View largeDownload slide Spectrum of patient and stakeholder engagement in research. Adapted from IAP2’s (International Association for Public Participation) Public Participation Spectrum [51]. Developed by Northwestern University Center for Community Health. Fig 1 View largeDownload slide Spectrum of patient and stakeholder engagement in research. Adapted from IAP2’s (International Association for Public Participation) Public Participation Spectrum [51]. Developed by Northwestern University Center for Community Health. Israel [44] delineates nine core CBPR principles and strategies for developing participatory research in partnership with community stakeholders. These same CBPR principles can be considered and adapted in developing strategies that are salient to patient and family engagement in research: Collaborative, equitable partnership in all phases of research Community is the unit of identity CBPR builds on strengths and resources of community CBPR fosters co-learning and capacity building Balance between knowledge generation and benefit for community partners CBPR focuses on problems of local relevance CBPR occurs through a cyclical and iterative process CBPR disseminates results to all partners and involves them in wider dissemination of results CBPR involves a long-term process and commitment to sustainability. The above core principles of CBPR represent the ideal values of community engagement, although it is not regarded as a “one size fits all” approach. Instead, CBPR needs to be regarded as an overall orientation, rather than a specific methodology or set of methodologies [4]. Each researcher and respective stakeholder needs to consider the ways in which an effective partnership can be guided by the above principles, and strive to implement research that addresses the aforementioned challenges with a collaborative approach [44]. For example the collective impact approach works to engage multiple players/stakeholders in working together to solve complex social problems. The principles of CBPR can be applied to carry out the five conditions for successful stakeholder engagement including (a) identifying a common agenda; (b) agreeing on the shared measures; (c) coordinating the mutually reinforcing activities; (d) fostering continuous communication; and identifying a backbone support organization [45]. Based on previous work developing PCOR engagement strategies [16] and previous work highlighting the practical application of CBPR principals to inform PCOR engagement strategies [43], we developed Table 1, which provides examples of each of the nine core CBPR principles, their relationship and alignment with suggested PCOR strategies, potential stakeholder and researcher challenges, and strategies to address these challenges. Common themes of CBPR principles, PCOR strategies, and relevant implementation challenges are related to: (a) fostering joint ownership in the identification of health priorities, the development and evaluation of research strategies and their design, and the dissemination of findings; (b) a keen recognition and appreciation for the importance of stakeholder-driven priorities, research, and solutions; (c) building capacity of both stakeholders and researchers to engage in research collaboratively; and (d) recognizing that conducting the research is not the endpoint but continues on with a commitment to dissemination in traditional and nontraditional venues and working towards sustainability. Table 1 Integrating a CBPR approach to patient and family and other stakeholdera engagement in patient-centered outcomes research Community-based participatory research (CBPR) principle Patient-centered outcomes research (PCOR) strategy Potential challenges for consideration Practical applications of PCOR strategies using CBPR principles Stakeholders Researchers Collaborative, equitable partnership in all phases of research— from identifying priorities to design to intervention development and implementation to evaluation to dissemination Research with patients as full partner Researcher and patient stakeholders share control equally Distrust of researchers and their agendas Varying perceptions of equitable power-sharing Lack of established contacts with key community-based organizations or individual champions from the target community Lack of history of working with the community and understanding of community politics and experiences Include a patient representative or patient advocacy group as co-leads of an application Involve patient stakeholders input fully in the decision-making, development, implementation, evaluation and dissemination process Community is the unit of identity—focus is on the community People as participants and collaborators Fostering ownership that the project is aligned with patient/caregiver/ target community concerns or priorities Engaging the right patient stakeholders and ensuring that the representation is reflective of patient, caregiver, and other stakeholder priorities and interests Create a stakeholder board that represents different perspectives of the patient community Develop multiple strategies for gaining input and perspectives from diverse constituents/stakeholders CBPR builds on strengths and resources of community Uses an asset-based approach to developing interventions building on assets in patient, caregivers, family, and provider settings Need to activate or empower patients and caregivers to voice their concerns, challenges, and strategies that they perceive will build on their existing resources and assets Moving researchers from a biomedical focus to contextualizing illness within cultural, social, and family norms Considering strategies that shift away from a deficit perspective to one that focuses on patient/caregiver assets and resources Employing activation and motivational interviewing strategies for patient/ caregivers to help them feel comfortable about voicing and participating in discussions related to appropriate intervention strategies Providing learning exchanges geared to researchers about illness and sociocultural perspectives that apply an asset-based framework CBPR fosters co-learning and capacity building Researchers and patient stakeholders work together to help build community capacity Patient representatives or organizations may have limited experiences in developing or understanding the research process Researchers may be unfamiliar with how to identify contexts and dynamics that impact stakeholder lived experience with the clinical outcome (s) of interest Conduct learning exchanges in which both researchers and stakeholders provide expertise relevant to the research process. Examples include research methods training for stakeholders, and coalition- and consensus-building for researchers Balance between knowledge generation and benefit for community partners Researchers and patient stakeholders identify at the outset their expectations goals of the research to be conducted and determine the practical benefit for patient stakeholders in engaging research Stakeholders may feel unsatisfied with traditional RCT study design (e.g., receiving placebo or usual care) Researchers may be unfamiliar with research methods outside of the RCT standard that may be more appropriate or relevant to stakeholders Explore study designs that balance scientific rigor with benefits to participants and perceived community concerns of the ethics of doing research (such as depriving a group of individuals from a beneficial intervention). Examples include comparative-effectiveness trials that compare two or more relevant strategies, cross-over control or wait-list control designs CBPR focuses on problems of local relevance—communities determine the priorities Stakeholders identify problem or works with researcher to identify problem Stakeholders may be interested in outcomes or measures beyond the research project Researchers may feel threatened by potential “scope creep” or challenged by balancing scientific rigor with relevance of research to stakeholders Conduct a multi-method formative assessment that includes input from these stakeholders in the design, evaluation, and interpretation of findings and contextualizing these findings in the experiences of patients/caregivers CBPR occurs through a cyclical and iterative process Goal of the research is not only about advancing knowledge but includes a process that allows for reflection, quality improvement, and actions related to improving engagement and sustainability that includes ongoing assessments of successes and challenges Stakeholders may have limited experience in participating in research and may need orientation and training related to their role in research and feel empowered to share their perspectives of what works and doesn’t work Researchers may have limited experience to doing formative research or utilizing other methodologies that can help understand why a program and/or partnership is struggling. Researchers may also be concerned that this cyclical and iterative process is too labor and time intensive Work with all stakeholders involved to identify measurable immediate successes and processes to identify challenges and potential solutions CBPR disseminates results to all partners and involves them in wider dissemination of results Data is shared, researchers and patient stakeholders decide its use and dissemination Stakeholders may be interested in dissemination that has immediate, practical benefit and place lower prioritization on dissemination via peer-reviewed publications Researchers may lack the skills to understand how to articulate or convey scientific information in a manner accessible and meaningful to lay audiences Disseminate findings through multiple vehicles and strategies, including patient forums, newspaper articles, policy briefs, monographs, community forums, patient education tools, provider education resources, and peer-reviewed articles CBPR involves a long-term process and commitment to sustainability Sustainability is an ongoing goal to strive towards Stakeholders may have prior experiences working with researchers that disappear after data collection Intended research may be limited by project periods or funding cycles Place sustainability as a goal at the outset of the project and consider potential strategies for sustaining efforts throughout the life of the research Community-based participatory research (CBPR) principle Patient-centered outcomes research (PCOR) strategy Potential challenges for consideration Practical applications of PCOR strategies using CBPR principles Stakeholders Researchers Collaborative, equitable partnership in all phases of research— from identifying priorities to design to intervention development and implementation to evaluation to dissemination Research with patients as full partner Researcher and patient stakeholders share control equally Distrust of researchers and their agendas Varying perceptions of equitable power-sharing Lack of established contacts with key community-based organizations or individual champions from the target community Lack of history of working with the community and understanding of community politics and experiences Include a patient representative or patient advocacy group as co-leads of an application Involve patient stakeholders input fully in the decision-making, development, implementation, evaluation and dissemination process Community is the unit of identity—focus is on the community People as participants and collaborators Fostering ownership that the project is aligned with patient/caregiver/ target community concerns or priorities Engaging the right patient stakeholders and ensuring that the representation is reflective of patient, caregiver, and other stakeholder priorities and interests Create a stakeholder board that represents different perspectives of the patient community Develop multiple strategies for gaining input and perspectives from diverse constituents/stakeholders CBPR builds on strengths and resources of community Uses an asset-based approach to developing interventions building on assets in patient, caregivers, family, and provider settings Need to activate or empower patients and caregivers to voice their concerns, challenges, and strategies that they perceive will build on their existing resources and assets Moving researchers from a biomedical focus to contextualizing illness within cultural, social, and family norms Considering strategies that shift away from a deficit perspective to one that focuses on patient/caregiver assets and resources Employing activation and motivational interviewing strategies for patient/ caregivers to help them feel comfortable about voicing and participating in discussions related to appropriate intervention strategies Providing learning exchanges geared to researchers about illness and sociocultural perspectives that apply an asset-based framework CBPR fosters co-learning and capacity building Researchers and patient stakeholders work together to help build community capacity Patient representatives or organizations may have limited experiences in developing or understanding the research process Researchers may be unfamiliar with how to identify contexts and dynamics that impact stakeholder lived experience with the clinical outcome (s) of interest Conduct learning exchanges in which both researchers and stakeholders provide expertise relevant to the research process. Examples include research methods training for stakeholders, and coalition- and consensus-building for researchers Balance between knowledge generation and benefit for community partners Researchers and patient stakeholders identify at the outset their expectations goals of the research to be conducted and determine the practical benefit for patient stakeholders in engaging research Stakeholders may feel unsatisfied with traditional RCT study design (e.g., receiving placebo or usual care) Researchers may be unfamiliar with research methods outside of the RCT standard that may be more appropriate or relevant to stakeholders Explore study designs that balance scientific rigor with benefits to participants and perceived community concerns of the ethics of doing research (such as depriving a group of individuals from a beneficial intervention). Examples include comparative-effectiveness trials that compare two or more relevant strategies, cross-over control or wait-list control designs CBPR focuses on problems of local relevance—communities determine the priorities Stakeholders identify problem or works with researcher to identify problem Stakeholders may be interested in outcomes or measures beyond the research project Researchers may feel threatened by potential “scope creep” or challenged by balancing scientific rigor with relevance of research to stakeholders Conduct a multi-method formative assessment that includes input from these stakeholders in the design, evaluation, and interpretation of findings and contextualizing these findings in the experiences of patients/caregivers CBPR occurs through a cyclical and iterative process Goal of the research is not only about advancing knowledge but includes a process that allows for reflection, quality improvement, and actions related to improving engagement and sustainability that includes ongoing assessments of successes and challenges Stakeholders may have limited experience in participating in research and may need orientation and training related to their role in research and feel empowered to share their perspectives of what works and doesn’t work Researchers may have limited experience to doing formative research or utilizing other methodologies that can help understand why a program and/or partnership is struggling. Researchers may also be concerned that this cyclical and iterative process is too labor and time intensive Work with all stakeholders involved to identify measurable immediate successes and processes to identify challenges and potential solutions CBPR disseminates results to all partners and involves them in wider dissemination of results Data is shared, researchers and patient stakeholders decide its use and dissemination Stakeholders may be interested in dissemination that has immediate, practical benefit and place lower prioritization on dissemination via peer-reviewed publications Researchers may lack the skills to understand how to articulate or convey scientific information in a manner accessible and meaningful to lay audiences Disseminate findings through multiple vehicles and strategies, including patient forums, newspaper articles, policy briefs, monographs, community forums, patient education tools, provider education resources, and peer-reviewed articles CBPR involves a long-term process and commitment to sustainability Sustainability is an ongoing goal to strive towards Stakeholders may have prior experiences working with researchers that disappear after data collection Intended research may be limited by project periods or funding cycles Place sustainability as a goal at the outset of the project and consider potential strategies for sustaining efforts throughout the life of the research aStakeholder: patient, family, community-based social service agencies, practice/implementation sites, providers, public agencies, funders, hospital and health systems, policy makers. View Large Table 1 Integrating a CBPR approach to patient and family and other stakeholdera engagement in patient-centered outcomes research Community-based participatory research (CBPR) principle Patient-centered outcomes research (PCOR) strategy Potential challenges for consideration Practical applications of PCOR strategies using CBPR principles Stakeholders Researchers Collaborative, equitable partnership in all phases of research— from identifying priorities to design to intervention development and implementation to evaluation to dissemination Research with patients as full partner Researcher and patient stakeholders share control equally Distrust of researchers and their agendas Varying perceptions of equitable power-sharing Lack of established contacts with key community-based organizations or individual champions from the target community Lack of history of working with the community and understanding of community politics and experiences Include a patient representative or patient advocacy group as co-leads of an application Involve patient stakeholders input fully in the decision-making, development, implementation, evaluation and dissemination process Community is the unit of identity—focus is on the community People as participants and collaborators Fostering ownership that the project is aligned with patient/caregiver/ target community concerns or priorities Engaging the right patient stakeholders and ensuring that the representation is reflective of patient, caregiver, and other stakeholder priorities and interests Create a stakeholder board that represents different perspectives of the patient community Develop multiple strategies for gaining input and perspectives from diverse constituents/stakeholders CBPR builds on strengths and resources of community Uses an asset-based approach to developing interventions building on assets in patient, caregivers, family, and provider settings Need to activate or empower patients and caregivers to voice their concerns, challenges, and strategies that they perceive will build on their existing resources and assets Moving researchers from a biomedical focus to contextualizing illness within cultural, social, and family norms Considering strategies that shift away from a deficit perspective to one that focuses on patient/caregiver assets and resources Employing activation and motivational interviewing strategies for patient/ caregivers to help them feel comfortable about voicing and participating in discussions related to appropriate intervention strategies Providing learning exchanges geared to researchers about illness and sociocultural perspectives that apply an asset-based framework CBPR fosters co-learning and capacity building Researchers and patient stakeholders work together to help build community capacity Patient representatives or organizations may have limited experiences in developing or understanding the research process Researchers may be unfamiliar with how to identify contexts and dynamics that impact stakeholder lived experience with the clinical outcome (s) of interest Conduct learning exchanges in which both researchers and stakeholders provide expertise relevant to the research process. Examples include research methods training for stakeholders, and coalition- and consensus-building for researchers Balance between knowledge generation and benefit for community partners Researchers and patient stakeholders identify at the outset their expectations goals of the research to be conducted and determine the practical benefit for patient stakeholders in engaging research Stakeholders may feel unsatisfied with traditional RCT study design (e.g., receiving placebo or usual care) Researchers may be unfamiliar with research methods outside of the RCT standard that may be more appropriate or relevant to stakeholders Explore study designs that balance scientific rigor with benefits to participants and perceived community concerns of the ethics of doing research (such as depriving a group of individuals from a beneficial intervention). Examples include comparative-effectiveness trials that compare two or more relevant strategies, cross-over control or wait-list control designs CBPR focuses on problems of local relevance—communities determine the priorities Stakeholders identify problem or works with researcher to identify problem Stakeholders may be interested in outcomes or measures beyond the research project Researchers may feel threatened by potential “scope creep” or challenged by balancing scientific rigor with relevance of research to stakeholders Conduct a multi-method formative assessment that includes input from these stakeholders in the design, evaluation, and interpretation of findings and contextualizing these findings in the experiences of patients/caregivers CBPR occurs through a cyclical and iterative process Goal of the research is not only about advancing knowledge but includes a process that allows for reflection, quality improvement, and actions related to improving engagement and sustainability that includes ongoing assessments of successes and challenges Stakeholders may have limited experience in participating in research and may need orientation and training related to their role in research and feel empowered to share their perspectives of what works and doesn’t work Researchers may have limited experience to doing formative research or utilizing other methodologies that can help understand why a program and/or partnership is struggling. Researchers may also be concerned that this cyclical and iterative process is too labor and time intensive Work with all stakeholders involved to identify measurable immediate successes and processes to identify challenges and potential solutions CBPR disseminates results to all partners and involves them in wider dissemination of results Data is shared, researchers and patient stakeholders decide its use and dissemination Stakeholders may be interested in dissemination that has immediate, practical benefit and place lower prioritization on dissemination via peer-reviewed publications Researchers may lack the skills to understand how to articulate or convey scientific information in a manner accessible and meaningful to lay audiences Disseminate findings through multiple vehicles and strategies, including patient forums, newspaper articles, policy briefs, monographs, community forums, patient education tools, provider education resources, and peer-reviewed articles CBPR involves a long-term process and commitment to sustainability Sustainability is an ongoing goal to strive towards Stakeholders may have prior experiences working with researchers that disappear after data collection Intended research may be limited by project periods or funding cycles Place sustainability as a goal at the outset of the project and consider potential strategies for sustaining efforts throughout the life of the research Community-based participatory research (CBPR) principle Patient-centered outcomes research (PCOR) strategy Potential challenges for consideration Practical applications of PCOR strategies using CBPR principles Stakeholders Researchers Collaborative, equitable partnership in all phases of research— from identifying priorities to design to intervention development and implementation to evaluation to dissemination Research with patients as full partner Researcher and patient stakeholders share control equally Distrust of researchers and their agendas Varying perceptions of equitable power-sharing Lack of established contacts with key community-based organizations or individual champions from the target community Lack of history of working with the community and understanding of community politics and experiences Include a patient representative or patient advocacy group as co-leads of an application Involve patient stakeholders input fully in the decision-making, development, implementation, evaluation and dissemination process Community is the unit of identity—focus is on the community People as participants and collaborators Fostering ownership that the project is aligned with patient/caregiver/ target community concerns or priorities Engaging the right patient stakeholders and ensuring that the representation is reflective of patient, caregiver, and other stakeholder priorities and interests Create a stakeholder board that represents different perspectives of the patient community Develop multiple strategies for gaining input and perspectives from diverse constituents/stakeholders CBPR builds on strengths and resources of community Uses an asset-based approach to developing interventions building on assets in patient, caregivers, family, and provider settings Need to activate or empower patients and caregivers to voice their concerns, challenges, and strategies that they perceive will build on their existing resources and assets Moving researchers from a biomedical focus to contextualizing illness within cultural, social, and family norms Considering strategies that shift away from a deficit perspective to one that focuses on patient/caregiver assets and resources Employing activation and motivational interviewing strategies for patient/ caregivers to help them feel comfortable about voicing and participating in discussions related to appropriate intervention strategies Providing learning exchanges geared to researchers about illness and sociocultural perspectives that apply an asset-based framework CBPR fosters co-learning and capacity building Researchers and patient stakeholders work together to help build community capacity Patient representatives or organizations may have limited experiences in developing or understanding the research process Researchers may be unfamiliar with how to identify contexts and dynamics that impact stakeholder lived experience with the clinical outcome (s) of interest Conduct learning exchanges in which both researchers and stakeholders provide expertise relevant to the research process. Examples include research methods training for stakeholders, and coalition- and consensus-building for researchers Balance between knowledge generation and benefit for community partners Researchers and patient stakeholders identify at the outset their expectations goals of the research to be conducted and determine the practical benefit for patient stakeholders in engaging research Stakeholders may feel unsatisfied with traditional RCT study design (e.g., receiving placebo or usual care) Researchers may be unfamiliar with research methods outside of the RCT standard that may be more appropriate or relevant to stakeholders Explore study designs that balance scientific rigor with benefits to participants and perceived community concerns of the ethics of doing research (such as depriving a group of individuals from a beneficial intervention). Examples include comparative-effectiveness trials that compare two or more relevant strategies, cross-over control or wait-list control designs CBPR focuses on problems of local relevance—communities determine the priorities Stakeholders identify problem or works with researcher to identify problem Stakeholders may be interested in outcomes or measures beyond the research project Researchers may feel threatened by potential “scope creep” or challenged by balancing scientific rigor with relevance of research to stakeholders Conduct a multi-method formative assessment that includes input from these stakeholders in the design, evaluation, and interpretation of findings and contextualizing these findings in the experiences of patients/caregivers CBPR occurs through a cyclical and iterative process Goal of the research is not only about advancing knowledge but includes a process that allows for reflection, quality improvement, and actions related to improving engagement and sustainability that includes ongoing assessments of successes and challenges Stakeholders may have limited experience in participating in research and may need orientation and training related to their role in research and feel empowered to share their perspectives of what works and doesn’t work Researchers may have limited experience to doing formative research or utilizing other methodologies that can help understand why a program and/or partnership is struggling. Researchers may also be concerned that this cyclical and iterative process is too labor and time intensive Work with all stakeholders involved to identify measurable immediate successes and processes to identify challenges and potential solutions CBPR disseminates results to all partners and involves them in wider dissemination of results Data is shared, researchers and patient stakeholders decide its use and dissemination Stakeholders may be interested in dissemination that has immediate, practical benefit and place lower prioritization on dissemination via peer-reviewed publications Researchers may lack the skills to understand how to articulate or convey scientific information in a manner accessible and meaningful to lay audiences Disseminate findings through multiple vehicles and strategies, including patient forums, newspaper articles, policy briefs, monographs, community forums, patient education tools, provider education resources, and peer-reviewed articles CBPR involves a long-term process and commitment to sustainability Sustainability is an ongoing goal to strive towards Stakeholders may have prior experiences working with researchers that disappear after data collection Intended research may be limited by project periods or funding cycles Place sustainability as a goal at the outset of the project and consider potential strategies for sustaining efforts throughout the life of the research aStakeholder: patient, family, community-based social service agencies, practice/implementation sites, providers, public agencies, funders, hospital and health systems, policy makers. View Large In regards to fostering joint ownership in the research process, from the identification of research priorities through the dissemination of findings, PCOR can adapt numerous strategies utilized by CBPR researchers to ensure ownership mechanisms are integrated in each phase of research. For example, including patient representatives and creating stakeholder boards that represent different perspectives from the patient community are components of CBPR studies addressing health issues ranging from diabetes management, asthma prevention, and promoting breast and cervical cancer screening. Importantly, CBPR studies create advisory boards with diverse representation, including patient perspectives and those of healthcare and social service providers, caretakers, peers, and community leaders [38, 46]. Though PCOR has prioritized advancing patient and family stakeholder initiatives, the incorporation of diverse perspectives from non-patients who have insider knowledge on patient populations, and including providers and healthcare systems and organizations, may be an important method of advancing PCOR and informing successful uptake into practice. Several core CBPR themes address the importance of community-framed and community-driven identification of needs at the local level and balancing data generation and research with action-oriented solutions and programming efforts. In CBPR studies, clearly identifying “community”—whether defined by geographic area or race, ethnicity, age, gender, sexual orientation, health system membership, or language—is an important component of ensuring the research agenda is community-driven [47]. For PCOR, the “community” of interest has already been identified as patients, families, and other caregivers. However, CBPR studies have provided insight into the importance of ensuring and integrating the diversity of community voices. In conducting PCOR, then, it is important for researchers to consider patient stakeholders not only by disease state (by which many PCOR studies engage patients currently) but also by other dimensions such as race, English language proficiency, or immigration status—dimensions which may greatly impact the identification of patient priorities and outcomes. Relatedly, by drawing upon the core CBPR theme of community members determining priorities, PCOR studies have the opportunity to advance our understanding of “patient-driven” outcomes beyond those that are clinical or physiological in nature. Recent studies on the integration of patient perspective into PCOR “big data” initiatives, for example, have tended to focus on the potential to generate patient-outcomes data that are clinical or physiological in nature (e.g., patient data that can be obtained through “wearable” devices such as pedometers), while largely neglecting outcomes such as quality of life or social outcomes that may be of equal importance to patient stakeholders [17–19]. Many CBPR studies, driven by community members’ desire to address these issues, assess the impact of interventions on outcomes germane to patients and their families that include quality of life, daily functioning, social connectedness, and self-efficacy. In terms of balancing research with action, CBPR studies have demonstrated how community stakeholders can work with researchers to ensure that research designs remain rigorous, such as comparative effectiveness trials or cross-over designs. Given that a central focus of PCOR is the use of large-scale clinical data systems for research, there are opportunities to develop innovative study designs that maximize patient benefit, minimize patient research burden, while maintaining research rigor [17]. In regards to CBPR studies that have demonstrated methods of readily translating research into action through policy or program implementation, PCOR investigators can consider strategies such as the use of patient-reported outcome data for real-time clinical improvements in healthcare settings [17]. Moreover, using this approach can optimize uptake and adoption into clinical and public health practice. The idea of reciprocal capacity-building is an essential component of CBPR study, and stems from the notion that as equal partners in the research process, both community and academic partners have unique strengths and contributions that can be harnessed, as well as learning needs [7, 38]. In CBPR studies, such capacity-building has been operationalized through the development of learning exchanges between academics and community partners [7]. Further, CBPR studies operate from an assets-based approach, and have utilized strategies such as community and asset mapping to determine local strengths that can be leveraged for study design, implementation, dissemination, and program sustainability. In the context of PCOR, patient stakeholders may benefit from capacity-building in the use and scope of “big data” initiatives [19]; conversely, researchers may need a better understanding of contextual factors—such as familial, neighborhood, and cultural influence—that impact patient health, both negatively and positively [4]. Finally, a key theme in CBPR is that it is cyclical in nature. Rather than research generation being an end-result, ongoing dissemination is built into the process, and this dissemination is used to inform the sustainability, and ultimately, scalability of proposed solutions [4, 48]. Napoles et al. [6] have suggested that successful dissemination and implementation of evidence-based interventions, especially within communities with the greatest health disparities, begins with the translation of interventions based on a CBPR approach, ultimately to facilitate social action or change within a specific community. PCOR, using principles of CBPR to inform dissemination, will result in programs or interventions that effectively translate the practice base and have lasting health impacts inspired and evaluated in part by the community they serve. CBPR maintains a commitment to dissemination through multiple channels to diverse stakeholders, and includes examples such as hosting community forums, disseminating policy briefs of findings, and working with media to highlight research results. Similarly, PCOR efforts such as PCOR-net already emphasize the dissemination of information from patient-centered channels such as social media. Through these formal and informal channels of dissemination, new questions can often emerge that then inform future directions for research. DISCUSSION The description of strategies and examples of how CBPR principles can be applied to patient and family, as well as other stakeholder engagement activities, is intended to reflect what we understand is a high bar for community engagement. Effective community and stakeholder engagement enriches the implementation and relevance of research by utilizing the experience of those most connected to the community of interest and results in the creation of more sustainable and translatable interventions and research [20]. For example, a recent study describing the PATIENTS initiative, focused on improving PCOR methods and addressing health disparities using a 10-step CER (comparative effectiveness research)/PCOR framework. The researchers described the general weaknesses of traditional research models in translating findings to the community and the need to address “the lack of infrastructure to train researchers in methods for meaningful engagement to incorporate the voices of the patient, community, and other healthcare stakeholders” [49] in order to adequately address the complex issues of health disparities. Integrating a multi-disciplinary team that includes CBPR researchers with their expertise in stakeholder identification and engagement and their broad understanding of community as “those who share a unit of identity” [50] is likely to be a key strategy in addressing this need and developing robust and meaningful outcomes to address health disparities affecting communities. We appreciate that there is a spectrum of engagement and that each research protocol may differ in the level of patient and family engagement. For researchers and academic-community partnerships looking for a framework to engage patients, families, and including other stakeholders in research, we believe that using CBPR principles can be instructive. PCORI’s recently created patient engagement rubric reflects many of the core CBPR principles discussed in this manuscript [15]. By highlighting the specific ways in which these CBPR principles can be translated for use in engaging patients and families, this article aims to equip research partnerships with concrete strategies for incorporating CBPR principles into their patient-centered research and practice. Compliance with Ethical Standards Conflict of Interest: Simona C. Kwon, Shiv Darius Tandon, Nadia Islam, Lindsey Riley, and Chau Trinh-Shevrin declare that they have no conflict of interest. Ethical Approval: This article does not contain any studies with human participants or animals performed by any of the authors. Informed Consent: This article does not contain any studies with human participants performed by any of the authors. Study Findings: The findings have not been previously published and the manuscript is not being simultaneously submitted elsewhere. Previous Presentations: “Understanding Patient and Stakeholder Engagement in Patient Centered Outcomes Research,” co-presented on March 28, 2014 at NYU School of Medicine by Chau Trinh-Shevrin, DrPH, and S. Darius Tandon, PhD. Primary Data: The authors have full control of all primary data and agree to allow the journal to review the data if requested. Acknowledgments The authors wish to thank Laurel Leslie, MD MPH, Stella Yi, PhD MPH, Rebecca Park, Nancy Van Devanter, DrPH RN, and Mary Northridge, PhD MPH for reviewing drafts of this manuscript and providing useful feedback. Lindsey Riley has a new affiliation as Associate Director of Research Partnerships at The Michael J. Fox Foundation for Parkinson’s Research. This study was funded by grants 2P60MD000538 (National Institute of Minority Health and Disparities), U48DP005008 (Centers for Disease Control and Prevention), UL1TR001445 (National Center for Advancing Translational Sciences). References 1. Bell J , Standish M . Communities and health policy: a pathway for change . Health Aff (Millwood) . 2005 ; 24 ( 2 ): 339 – 342 . Google Scholar CrossRef Search ADS PubMed 2. Cargo M , Mercer SL . The value and challenges of participatory research: strengthening its practice . Annu Rev Public Health . 2008 ; 29 : 325 – 350 . Google Scholar CrossRef Search ADS PubMed 3. Mercer S , Green L . Federal funding and support for participatory research in public health and health care . In: Minkler MWN , ed. Community based participatory research for health: process to outcomes . 2nd ed . San Francisco, CA : Jossey-Bass ; 2008 : 399 – 406 . 4. Wallerstein N , Duran B . Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity . Am J Public Health . 2010 ; 100 ( Suppl 1 ): S40 – S46 . Google Scholar CrossRef Search ADS PubMed 5. Mullins CD , Abdulhalim AM , Lavallee DC . Continuous patient engagement in comparative effectiveness research . JAMA . 2012 ; 307 ( 15 ): 1587 – 1588 . Google Scholar CrossRef Search ADS PubMed 6. Nápoles AM , Santoyo-Olsson J , Stewart AL . Methods for translating evidence-based behavioral interventions for health-disparity communities . Prev Chronic Dis . 2013 ; 10 : E193 . Google Scholar CrossRef Search ADS PubMed 7. Chau TS , Islam N , Tandon D , Ho-Asjoe H , Rey M . Using community-based participatory research as a guiding framework for health disparities research centers . Prog Community Health Partnersh . 2007 ; 1 ( 2 ): 195 – 205 . Google Scholar CrossRef Search ADS PubMed 8. Meade CD , Menard JM , Luque JS , Martinez-Tyson D , Gwede CK . Creating community-academic partnerships for cancer disparities research and health promotion . Health Promot Pract . 2011 ; 12 ( 3 ): 456 – 462 . Google Scholar CrossRef Search ADS PubMed 9. D’Alonzo KT . Getting started in CBPR: lessons in building community partnerships for new researchers . Nurs Inq . 2010 ; 17 ( 4 ): 282 – 288 . Google Scholar CrossRef Search ADS PubMed 10. Hasnain-Wynia R , Beal AC . Role of the patient-centered outcomes research institute in addressing disparities and engaging patients in clinical research . Clin Ther . 2014 ; 36 ( 5 ): 619 – 623 . Google Scholar CrossRef Search ADS PubMed 11. Concannon TW , Meissner P , Grunbaum JA et al. A new taxonomy for stakeholder engagement in patient-centered outcomes research . J Gen Intern Med . 2012 ; 27 ( 8 ): 985 – 991 . Google Scholar CrossRef Search ADS PubMed 12. Patient-Centered Outcomes Research Institute . PCORI Engagement Rubric . 2016 . Available at: http://www.pcori.org/sites/default/files/Engagement-Rubric.pdf. Accessibility verified April 3, 2017 . 13. Patient Protection and Affordable Care Act, 124, §6301 and 10602 . 2010 . Available at: https://legcounsel.house.gov/Comps/Patient%20Protection%20And%20Affordable%20Care%20Act.pdf. Accessibility verified November 20, 2017 . 14. Patient-Centered Outcomes Research Institute . About Us . 2014 . Available at: http://www.pcori.org/about-us. Accessibility verified March 25, 2014 . 15. Patient-Centered Outcomes Research Institute . PCORI Patient and Family Engagement Rubric . 2014 . Available at: http://www.pcori.org/assets/2014/02/PCORI-Patient-and-Family-Engagement-Rubric.pdf. Accessibility verified March 25, 2014 . 16. Sheridan S , Schrandt S , Forsythe L , Hilliard TS , Paez KA ; Advisory Panel on Patient Engagement (2013 inaugural panel) . The PCORI engagement rubric: promising practices for partnering in research . Ann Fam Med . 2017 ; 15 ( 2 ): 165 – 170 . Google Scholar CrossRef Search ADS PubMed 17. Howie L , Hirsch B , Locklear T , Abernethy AP . Assessing the value of patient-generated data to comparative effectiveness research . Health Aff (Millwood) . 2014 ; 33 ( 7 ): 1220 – 1228 . Google Scholar CrossRef Search ADS PubMed 18. Longhurst CA , Harrington RA , Shah NH . A ‘green button’ for using aggregate patient data at the point of care . Health Aff (Millwood) . 2014 ; 33 ( 7 ): 1229 – 1235 . Google Scholar CrossRef Search ADS PubMed 19. Fleurence RL , Beal AC , Sheridan SE , Johnson LB , Selby JV . Patient-powered research networks aim to improve patient care and health research . Health Aff (Millwood) . 2014 ; 33 ( 7 ): 1212 – 1219 . Google Scholar CrossRef Search ADS PubMed 20. Drahota A , Meza RD , Brikho B et al. Community-academic partnerships: a systematic review of the state of the literature and recommendations for future research . Milbank Q . 2016 ; 94 ( 1 ): 163 – 214 . Google Scholar CrossRef Search ADS PubMed 21. Brett JSS , Mockford C , Seers K , Herron-marx S , Bayliss H. The PIRICOM Study: A systematic review of the conceptualisation, measurement, impact and outcomes of patients and public involvement in health and social care research . Warwick, UK : University of Warwick ; 2010 . 22. Mockford C , Staniszewska S , Griffiths F , Herron-Marx S . The impact of patient and public involvement on UK NHS health care: a systematic review . Int J Qual Health Care . 2012 ; 24 ( 1 ): 28 – 38 . Google Scholar CrossRef Search ADS PubMed 23. Nilsen ES , Myrhaug HT , Johansen M , Oliver S , Oxman AD . Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material . Cochrane Database Syst Rev . 2006 ;( 3 ): CD004563 . 24. Domecq JP , Prutsky G , Elraiyah T et al. Patient engagement in research: a systematic review . BMC Health Serv Res . 2014 ; 14 : 89 . doi: 10.1186/1472-6963-14-89 . Google Scholar CrossRef Search ADS PubMed 25. Minogue V , Girdlestone J . Building capacity for service user and carer involvement in research: the implications and impact of best research for best health . Int J Health Care Qual Assur . 2010 ; 23 ( 4 ): 422 – 435 . Google Scholar CrossRef Search ADS PubMed 26. Ali K , Roffe C , Crome P . What patients want: consumer involvement in the design of a randomized controlled trial of routine oxygen supplementation after acute stroke . Stroke . 2006 ; 37 ( 3 ): 865 – 871 . Google Scholar CrossRef Search ADS PubMed 27. Morris MC , Nadkarni VM , Ward FR , Nelson RM . Exception from informed consent for pediatric resuscitation research: community consultation for a trial of brain cooling after in-hospital cardiac arrest . Pediatrics . 2004 ; 114 ( 3 ): 776 – 781 . Google Scholar CrossRef Search ADS PubMed 28. Légaré F , Boivin A , van der Weijden T et al. Patient and public involvement in clinical practice guidelines: a knowledge synthesis of existing programs . Med Decis Making . 2011 ; 31 ( 6 ): E45 – E74 . Google Scholar CrossRef Search ADS PubMed 29. Edwards V , Wyatt K , Logan S , Britten N . Consulting parents about the design of a randomized controlled trial of osteopathy for children with cerebral palsy . Health Expect . 2011 ; 14 ( 4 ): 429 – 438 . Google Scholar CrossRef Search ADS PubMed 30. Jones L , Wells K . Strategies for academic and clinician engagement in community-participatory partnered research . JAMA . 2007 ; 297 ( 4 ): 407 – 410 . Google Scholar CrossRef Search ADS PubMed 31. VanDevanter N , Kwon S , Sim SC , Chun K , Trinh-Shevrin C ; B Free CEED Coalition . Evaluation of community-academic partnership functioning: center for the elimination of hepatitis B health disparities . Prog Community Health Partnersh . 2011 ; 5 ( 3 ): 223 – 233 . Google Scholar CrossRef Search ADS PubMed 32. Guarino P , Elbourne D , Carpenter J , Peduzzi P . Consumer involvement in consent document development: a multicenter cluster randomized trial to assess study participants’ understanding . Clin Trials . 2006 ; 3 ( 1 ): 19 – 30 . Google Scholar CrossRef Search ADS PubMed 33. Koops L , Lindley RI . Thrombolysis for acute ischaemic stroke: consumer involvement in design of new randomised controlled trial . BMJ . 2002 ; 325 ( 7361 ): 415 . Google Scholar CrossRef Search ADS PubMed 34. Boote J , Baird W , Beecroft C . Public involvement at the design stage of primary health research: a narrative review of case examples . Health Policy . 2010 ; 95 ( 1 ): 10 – 23 . Google Scholar CrossRef Search ADS PubMed 35. Forbes LJ , Nicholls CM , Linsell L , Graham J , Tompkins C , Ramirez AJ . Involving users in the design of a randomised controlled trial of an intervention to promote early presentation in breast cancer: qualitative study . BMC Med Res Methodol . 2010 ; 10 : 110 . doi: 10.1186/1471-2288-10-110 . Google Scholar CrossRef Search ADS PubMed 36. Salimi Y , Shahandeh K , Malekafzali H et al. Is Community-based participatory research (CBPR) useful? A systematic review on papers in a decade . Int J Prev Med . 2012 ; 3 ( 6 ): 386 – 393 . Google Scholar PubMed 37. Viswanathan M , Ammerman A , Eng E et al. Community-Based participatory research: assessing the evidence. Evidence report/technology assessment No. 99 . Rockville, MD : AHRQ Publication 04-E022-2 .; 2004 . 38. Minkler M . Linking science and policy through community-based participatory research to study and address health disparities . Am J Public Health . 2010 ; 100 ( Suppl 1 ): S81 – S87 . Google Scholar CrossRef Search ADS PubMed 39. De las Nueces D , Hacker K , DiGirolamo A , Hicks LS . A systematic review of community-based participatory research to enhance clinical trials in racial and ethnic minority groups . Health Serv Res . 2012 ; 47 ( 3 Pt 2 ): 1363 – 1386 . Google Scholar CrossRef Search ADS PubMed 40. Washington AE , Lipstein SH . The patient-centered outcomes research institute–promoting better information, decisions, and health . N Engl J Med . 2011 ; 365 ( 15 ): e31 . Google Scholar CrossRef Search ADS PubMed 41. Wells K , Jones L . “Research” in community-partnered, participatory research . JAMA . 2009 ; 302 ( 3 ): 320 – 321 . Google Scholar CrossRef Search ADS PubMed 42. Kellogg Health Scholars. Kellogg Health Scholars Community Track. Available at: https://kellogghealthscholars.org/about/community.php. Accessibility verified November 20, 2017 . 43. Sofolahan-Oladeinde Y , Mullins CD , Baquet CR . Using community-based participatory research in patient-centered outcomes research to address health disparities in under-represented communities . J Comp Eff Res . 2015 ; 4 ( 5 ): 515 – 523 . Google Scholar CrossRef Search ADS PubMed 44. Israel BA , Schulz AJ , Parker EA , Becker AB , Allen A , Gusman JR . Critical issues in developing and following community-based participatory research principles . In: Minkler M & Wallerstein N , eds. Community-based participatory research for health . San Francisco, CA : Jossey-Bass ; 2003 : 56 – 73 . 45. Kania J , Kramer M . Collective impact . Stanford Social Innovation Review . 2011 ; 9 ( 1 ): 36 – 41 . 46. Rideout C , Gil R , Browne R et al. Using the Delphi and snow card techniques to build consensus among diverse community and academic stakeholders . Prog Community Health Partnersh . 2013 ; 7 ( 3 ): 331 – 339 . Google Scholar CrossRef Search ADS PubMed 47. Minkler M , Wallerstein N. Community-based participatory research for health . San Francisco, CA : Jossey-Bass ; 2003 . 48. Hacker K , Tendulkar SA , Rideout C et al. Community capacity building and sustainability: outcomes of community-based participatory research . Prog Community Health Partnersh . 2012 ; 6 ( 3 ): 349 – 360 . Google Scholar CrossRef Search ADS PubMed 49. Huang J , Lipman PD , Daniel Mullins C . Bridging the divide: building infrastructure to support community-academic partnerships and improve capacity to conduct patient-centered outcomes research . Transl Behav Med . 2017 ; 7 ( 4 ): 773 – 782 . doi: 10.1007/s13142-017-0487-z . Google Scholar CrossRef Search ADS PubMed 50. Burke JG , Jones J , Yonas M et al. PCOR, CER, and CBPR: alphabet soup or complementary fields of health research? Clin Transl Sci . 2013 ; 6 ( 6 ): 493 – 496 . Google Scholar CrossRef Search ADS PubMed 51. International Association for Public Participation . IAP2’s Public Participation Spectrum . 2014 . Available at: http://c.ymcdn.com/sites/www.iap2.org/resource/resmgr/foundations_course/IAP2_P2_Spectrum_FINAL.pdf. Accessibility verified April 3, 2017 . © Society of Behavioral Medicine 2017

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Published: Nov 29, 2017

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