Stakeholder Engagement In Research Research Articles

Editorial: The case for more action and more research into healthcare provision and health inequalities for people with intellectual disabilities

Accessible SummariesAge, Sex, and Constitutional Factors Whittle et al. identify how sex impacts mental health service use for women with intellectual disability. Sheerin et al. highlight how age‐specific needs are unmet due to service gaps. Burke et al. identify how age‐related healthcare risks for bone health are different for people with intellectual disability.Living and Working Conditions van den Bemd et al. reported the recording of management of long‐term conditions for patients with intellectual disabilities in long‐term care appears suboptimal. Skoss et al. report on the infrastructure of group home settings in Australia and how after COVID‐19 people living in these settings receive fewer healthcare services.Individual Lifestyle Factors Lunsky et al. explored the use of a ‘check‐in tool’ to support people with intellectual disability proactively.Community and Social Networks Donaldson et al. and Karas et al. highlight systemic issues with eyecare and examine the impact of peer‐to‐peer support and community advocacy on improving access to eye care. Schormans et al. examine the lack of social and community support for homeless youth with intellectual disability. Sykes et al. highlight reasonable adjustments and influence of community and familial attitudes in influencing breast and cervical cancer screening access. Earle et al. detail how broader societal and cultural norms affect menstrual health support. Heslop and Lauer found limited evidence about preventing specific avoidable causes of death in people with intellectual disability and outline the need for ‘whole population’ policy changes. Iffland et al. found that lung infections, choking, flu and heart problems were much more likely to be a contributing cause of deaths for people with intellectual disability. Hatton et al. explore the impact of COVID‐19 on access to health services and highlight severe disruptions during the pandemic which persisted and worsened postpandemic. Beeken et al. detail how stakeholder engagement in research and policymaking can improve health and address health inequalities.

How the COVID-19 pandemic changed stakeholder engagement processes in sustainability research in the long-term

Background The COVID-19 pandemic affected stakeholder engagement in sustainability research projects in many ways. But which effects appear permanent today, after the pandemic ended? Methods To address this, we interviewed researchers and stakeholders and carried out a survey among European sustainability research projects in 2022. Results We find that the pandemic years disrupted stakeholder-based research, also with lasting effects. The forced shift to online modes showed how digital engagement can bring benefits in terms of easier and more efficient stakeholder engagement, but also that important aspects are lost, particularly regarding intensity of collaboration and depth of insights. Whether to go online or stay offline depends largely on the research objective, which stakeholders to involve, and how well researchers and stakeholders already know each other. Most researchers and stakeholders want to continue online collaboration in the long term, especially those with positive online collaboration experiences from the pandemic years. Conclusions The pandemic has a long-term impact on stakeholder engagement in research; online engagement cannot replace all benefit of previous in-person interactions with stakeholders, but it has led to digital innovations and expanded the engagement portfolio. Our research has provided qualitative insights into the impact of the pandemic on stakeholder engagement in various sustainability research projects and the implications for the long-term future that are relevant to researchers and funding agencies.

218 Researcher and Stakeholder Partner Perspectives on Engaged Research During the COVID-19 Pandemic

OBJECTIVES/GOALS: We sought to explore how the COVID-19 pandemic impacted community and stakeholder engagement in research from both researcher and stakeholder partner perspectives and to identify challenges, strategies, and other facilitators affecting their experience, including those related to virtual engagement. METHODS/STUDY POPULATION: We conducted semi-structured interviews with ten researchers and eight stakeholder partners who conducted or collaborated on stakeholder-engaged health research during the COVID-19 pandemic (March 2020 onwards). Potential participants were identified purposively and through snowball sampling. Interviews were conducted via Zoom, recorded, and transcribed for analysis. The transcribed data were qualitatively analyzed through an iterative process involving memoing and consensus coding using inductive and deductive codes. We reviewed memos and code reports to identify and describe key categories and themes. RESULTS/ANTICIPATED RESULTS: The challenges and facilitators identified varied based on factors such as geographic scope of the partnership (local vs national) and previous engagement type (virtual vs in-person). Many challenges were related to virtual engagement, such as dealing with distractions, limited access to Internet, or difficulty forming relationships online, or to wellbeing and personal circumstances, such as feeling burnt out, managing increased caregiving responsibilities, or concern about risk of illness if conducting in-person activities. Facilitators identified included having strong existing partnerships, utilizing strategies to enhance virtual engagement, adapting activities to manage risk of in-person interactions, and showing support to stakeholder partners. DISCUSSION/SIGNIFICANCE: By better understanding challenges and facilitators affecting experiences of both researchers and stakeholder partners engaging in research during the COVID-19 pandemic, we can develop strategies and resources to better support research partnerships during future health emergencies.

156 Approaches to disseminating a community engagement tool through capacity building

OBJECTIVES/GOALS: Despite the importance of stakeholder engagement in research, there remains a critical need for methods that facilitate the engagement of diverse stakeholders throughout the research process. We describe dissemination and capacity building for the SEED Method, which was created to involve stakeholders in the research development process. METHODS/STUDY POPULATION: In order to raise greater awareness of the SEED Method and to build capacity among research teams, we received funding from the Patient-Centered Outcomes Research Institute (PCORI) for a 2-year project to implement a plan of outreach, training, interactive learning, and technical assistance, as well as an innovative partnership with the Extension Foundation. Tools created for this project include an internet site providing tools and materials, live and on-demand webinars, training videos, SEED materials, a blog, and an interactive course/toolkit. In addition, we created a monthly learning collaborative and provided direct technical assistance to teams using the SEED Method in their research engagement projects. We evaluated user satisfaction with the tools and support provided through online surveys. RESULTS/ANTICIPATED RESULTS: We highlight the routes to reaching potential users and diverse approaches to capacity building, including multi-media training materials, interactive learning sessions, and customized technical assistance. As a result of outreach and capacity building, there are currently 13 research teams using the SEED Method to engage stakeholders in research development across various topics. We link this result to the dissemination and capacity building strategies utilized and the paths through which teams learned about the SEED Method. We also look at how the teams are using the method in terms of project goals and approaches to adapting the SEED Toolkit. DISCUSSION/SIGNIFICANCE: The use of PHR continues to increase, and with it the emergence of new approaches to involve patients, stakeholders, and communities. Innovations in engagement need to reach potential users and build capacity among researchers and communities.

Stakeholder-Engaged Research: Examples From Aphasia

The other research ... it's like guinea pigs ... they tell you what is about and really you can't change it. —Participant B.G. from McMenamin et al. (2021, p. 6) In this issue of Topics in Language Disorders, Guest Issue Editor Dr. Jacqueline Hinckley invited research teams to share work influenced by stakeholder engagement via Project BRIDGE, a PCORI Eugene Washington Engagement-funded stakeholder engagement effort. As guest issue editor, she carefully crafted this issue to cover various types of stakeholder engagement and various outcomes of this process. First, Brancamp (2023) shares about the influence the project BRIDGE team had on her ongoing project related to posttraumatic growth in aphasia. Next, Szabo et al. (2023) describe the intersection of the Life Participation Approach to Aphasia with stakeholder engagement in aphasia research. Then, Off et al. (2023) describe their research, with students as engaged stakeholders further expanding the view and approach of stakeholder engagement in pedagogical research. The next two articles by Strong et al. (2023) and Madden et al. (2023) highlight the process and outcomes of stakeholder engagement in research about friendship and aphasia.1 Finally, Kim et al. (2023) describe how their team, which included multiple stakeholders, conducted a project about creating more aphasia-friendly retail businesses in their area. In summary, Dr. Hinckley and the authors of this issue (many of whom are stakeholders) provide multiple perspectives of the different strategies and approaches to stakeholder-engaged aphasia research. —Sarah E. Wallace, PhD —Gary A. Troia, PhD Co-Editors

Promoting community stakeholder engagement in research on treatment for pregnant women with opioid use disorder.

Aim: Community stakeholder engagement in research (CSER) can improve research relevance and efficiency as well as prevent harmful practices, particularly for vulnerable populations. Despite potential benefits, researchers lack familiarity with CSER methods. Methods: We describe CSER strategies used across the research continuum, including proposal development, study planning and the first years of a comparative effectiveness study of care for pregnant women with opioid use disorder. Results: We highlight successful strategies, grounded in principles of engagement, to establish and maintain stakeholder relationships, foster bidirectional communication and trustand support active participation of women with opioid use disorder in the research process. Conclusion: CSER methods support research with a disenfranchised population. Future work will evaluate the impact of CSER strategies on study outcomes and dissemination.

Youth and family engagement in childhood disability evidence syntheses: A scoping review.

Within the last decade, stakeholder engagement in research has become increasingly popular in childhood disability research; however, literature on the engagement of youth with neurodisabilities and their families in evidence syntheses is underdeveloped. Involving patients as partners in research has the potential to improve applicability and relevance of the research and benefit patient partners (e.g. enhanced self-esteem, increased research knowledge and skills); however, the methods, challenges, outcomes and recommendations of engaging youth with neurodisabilities and their families in evidence syntheses are unknown. Two parents of youth with complex disability needs were engaged as partners throughout this review. Following methods outlined by Arksey and O'Malley (2005), the primary research question in this scoping review is twofold: (i) what activities have youth with neurodisabilities and their families been engaged in as part of evidence syntheses and (ii) what were the outcomes of that engagement? After full text review of 369 articles, nine articles were included. Youth and families were engaged prior to the evidence synthesis and at every stage in the project, most often during data analysis where they contextualized the findings. Youth and family engagement were not formally evaluated; however, positive outcomes were reported by parents and researchers. Challenges such as increased time, sustaining engagement, and parents' dissatisfaction with their level of involvement were reported. Recommendations centred around providing partners with information, building relationships via social media, and openly communicating about roles, feedback and logistics. Childhood disability researchers should be aware of how they can increase engagement opportunities at all stages of evidence syntheses and how they might improve accessibility for youth with neurodisabilities and their families. Further research is needed to solidify a unified framework for conduct and reporting of youth and family engagement in evidence syntheses.

Engaging Patient Advisory Committees to Inform a Genomic Cancer Risk Study: Lessons for Future Efforts.

Introduction The Cancer Health Assessments Reaching Many study seeks to reduce disparities in genomic care. Two patient advisory committees (PACs) were formed, 1 of English speakers and 1 of Spanish speakers, to vet study processes and materials. Stakeholder engagement in research is relatively new, and we know little about how stakeholders view their engagement. We wanted to learn how patient stakeholders viewed the process, to inform future patient engagement efforts. Methods Patients at 2 study sites were invited to serve on 2 PACs. We used an iterative engagement process to solicit and incorporate patient feedback. Much of the PAC feedback on study materials and processes was incorporated. Using surveys and exit interviews, we evaluated stakeholders' experiences as PAC members. Results Nearly all PAC members felt satisfied and included in the study decisions, but surveys and exit interviews suggested the need to improve communications. Discussion Although most believed their feedback was used, and most felt included in study decisions, some said they did not know whether their opinions were used to modify materials or approaches. This suggests the need to explain to patient stakeholders the extent to which their feedback was used and to inform them about the impact that other stakeholders, such as institutional review boards, have on decisions. Conclusion Our evaluation highlights the value of dedicating resources to stakeholder engagement. Although gathering patient feedback on study materials and processes introduced time constraints and complexity to our study, adaptations to materials and processes furthered study goals.

"It's Almost as if Stakeholder Engagement is the Annoying 'Have-to-do'…": Can Ethics Review Help Address the "3 Ts" of Tokenism, Toxicity, and Tailoring in Stakeholder Engagement?

Ethics guidance recommends that researchers engage stakeholders and that RECs review research for such engagement. The ethics review process may present a unique opportunity to support stakeholder engagement practices for HIV prevention studies. We conducted 28 interviews with experts from 12 countries to explore this issue, and analyzed the data using Thematic Analysis. We found that the value of engagement and review processes was strongly endorsed. However, we identified 3 major thematic complexities, namely: “Tokenism” where processes risk being “tick-box”; “Toxicity”, where practices may inadvertently have negative consequences; and “Tailoring”, where processes need careful variation in intensity. We make recommendations for how these “Ts” can be addressed during the review process to help contribute to thoughtful review of meaningful stakeholder engagement in research.

A Guide to Selecting Participatory Research Methods Based on Project and Partnership Goals.

Participatory research engages community stakeholders in the research process, from problem identification and developing the research question, to dissemination of results. There is increasing recognition in the field of health research that community-engaged methods can be used throughout the research process. The volume of guidance for engaging communities and conducting participatory research has grown steadily in the past 40+ years, in many countries and contexts. Further, some institutions now require stakeholder engagement in research as a condition of funding. Interest in collaborating in the research process is also growing among patients and the public. This article provides an overview for selecting participatory research methods based on project and partnerships goals.

Digital and virtual strategies to advance community stakeholder engagement in research during COVID-19 pandemic.

Despite the adversity presented by COVID-19 pandemic, it also pushed for experimenting with innovative strategies for community engagement. The Community Research Advisory Council (C-RAC) at Johns Hopkins University (JHU), is an initiative to promote community engagement in research. COVID-19 rendered it impossible for C-RAC to conduct its meetings all of which have historically been in person. We describe the experience of advancing the work of the C-RAC during COVID-19 using digital and virtual strategies. Since March 2020, C-RAC transitioned from in person to virtual meetings. The needs assessment was conducted among C-RAC members, and individualized solutions provided for a successful virtual engagement. The usual working schedule was altered to respond to COVID-19 and promote community engaged research. Attendance to C-RAC meetings before and after the transition to virtual operation increased from 69% to 76% among C-RAC members from the community. In addition, the C-RAC launched new initiatives and in eighteen months since January 2020, it conducted 50 highly rated research reviews for 20 research teams. The experience of the C-RAC demonstrates that when community needs are assessed and addressed, and technical support is provided, digital strategies can lead to greater community collaborations.

COVID-19 vs. stakeholder engagement: the impact of coronavirus containment measures on stakeholder involvement in European energy research projects.

The coronavirus (COVID-19) pandemic has affected societies and economies around the world, and the scientific community is no exception. Whereas the importance of stakeholder engagement in research has grown quickly the consequences of the pandemic on this has so far not been empirically studied. In this paper, we investigate the effects of the COVID-19 crisis on European energy research, in particular the stakeholder work, during the first wave of the coronavirus in spring and summer 2020. We pose the research questions: (i) How much of a problem are the coronavirus containment measures for stakeholder engagement? (ii) How have researchers coped with the situation, and (iii) How do they evaluate alternative stakeholder activities implemented? We conducted an online survey among European energy research projects with stakeholder engagement between June and August 2020. We found that only one of six engagement activities could be implemented as planned, whereas almost half were cancelled or delayed. The most common coping strategies were changing involvement formats - mainly to webinars or online workshops - or postponement. Whereas respondents are largely satisfied with one-to-one and unidirectional online formats, such as webinars, online interviews, and online surveys, they see interactive group activities as less suitable for online engagement. Most respondents plan to continue using online formats to complement, but not to replace, physical meetings in future research. All long-term effects remain to be seen, but given the postponement of many stakeholder involvement activities, many projects may face problems at later stages of their realisation. These findings suggest that the pandemic may have catalysed a rapid introduction of specific online formats in academic stakeholder interaction processes.

COVID-19 vs. stakeholder engagement: the impact of coronavirus containment measures on stakeholder involvement in European energy research projects

The coronavirus (COVID-19) pandemic has affected societies and economies around the world, and the scientific community is no exception. Whereas the importance of stakeholder engagement in research has grown quickly the consequences of the pandemic on this has so far not been empirically studied. In this paper, we investigate the effects of the COVID-19 crisis on European energy research, in particular the stakeholder work, during the first wave of the coronavirus in spring and summer 2020. We pose the research questions: (i) How much of a problem are the coronavirus containment measures for stakeholder engagement? (ii) How have researchers coped with the situation, and (iii) How do they evaluate alternative stakeholder activities implemented? We conducted an online survey among European energy research projects with stakeholder engagement between June and August 2020. We found that only one of six engagement activities could be implemented as planned, whereas almost half were cancelled or delayed. The most common coping strategies were changing involvement formats – mainly to webinars or online workshops – or postponement. Whereas respondents are largely satisfied with one-to-one and unidirectional online formats, such as webinars, online interviews, and online surveys, they see interactive group activities as less suitable for online engagement. Most respondents plan to continue using online formats to complement, but not to replace, physical meetings in future research. All long-term effects remain to be seen, but given the postponement of many stakeholder involvement activities, many projects may face problems at later stages of their realisation. These findings suggest that the pandemic may have catalysed a rapid introduction of specific online formats in academic stakeholder interaction processes.

COVID-19 vs. stakeholder engagement: the impact of coronavirus containment measures on stakeholder involvement in European energy research projects

The coronavirus disease 2019 (COVID-19) pandemic has affected societies and economies around the world, and the scientific community is no exception. Whereas the importance of stakeholder engagement in research has grown quickly for many EU projects, yet no research has studied the consequences of the pandemic on this. In this paper, we investigate the effects of the COVID-19 crisis on European energy research, in particular the stakeholder work, during the first wave of the coronavirus in spring and summer 2020. We pose the research questions: (i) How big of a problem are the coronavirus containment measures for stakeholder engagement? (ii) How have researchers coped with the situation, and (iii) How do they evaluate alternative stakeholder activities implemented? We conducted an online survey among European energy research projects with stakeholder engagement between June and August 2020. We found that only one of six engagement activities could be implemented as planned, whereas almost half were cancelled or delayed. The most common coping strategies were changing involvement formats – mainly to webinars or online workshops – or postponement. Webinars, online interviews, and online surveys were seen as the best online formats. Most respondents plan to continue using online formats to complement, but not to replace, physical meetings in future research. All long-term effects remain to be seen, but given the postponement of many stakeholder involvement activities, many projects may face problems at later stages of their realisation. These findings are highly relevant for funding institutions and provide important insights on coping strategies for fellow researchers beyond the energy field.

Deliberative Stakeholder Engagement in Person-centered Health Research

ABSTRACT Robust stakeholder engagement in health research requires broad communicative integration, not only of patients but also other stakeholders such as health system leaders, clinicians, and researchers. As patients’ personal narratives tend to focus on their own health care experiences, it can be challenging to incorporate these perspectives at the health system level, where discussions often address technical issues such as strategies for aggregating and interpreting population-level data. The PaTH Health System Leaders Demonstration Project provides a case study to explore the potential usefulness of deliberative techniques for facilitating heterogeneous stakeholder engagement in what some sociologists of science call ‘hybid forums.’ Close textual analysis of the event transcript yields insight on how social learning motivates group opinion shifts in deliberative processes. Reconstruction of the event’s narrative arc marks a path of ‘dynamic updating’ that manifests in group opinion change. Analysis of episodes where participants perform ‘deliberative openness’ lends qualitative nuance to previously reported process measure outcomes reflecting high participant satisfaction. Such inquiry helps address a gap in literature on stakeholder engagement in comparative effectiveness health research, sheds light on the understudied genre of ‘empowered deliberation’, and illustrates design principles and practices useful for upstream integration of stakeholder engagement in the research process.

Organizational supports for knowledge translation in paediatric health centres and research institutes: insights from a Canadian environmental scan

BackgroundOrganizational supports are thought to help address wide-ranging barriers to evidence-informed health care (EIHC) and knowledge translation (KT). However, little is known about the nature of the resources and services that exist within paediatric health care and research settings across Canada to facilitate evidence use in health care delivery. This survey examined existing supports for EIHC/KT within these organizations to inform the design of similar EIHC/KT support programmes.MethodsA national environmental scan was conducted using a bilingual online survey distributed to leaders at Canadian paediatric academic health science centres and their affiliated research institutes. Participants were invited through email, social media and webinar invitations and snowball sampling. Supports of interest included personnel, resources, services, organizational structures or processes, and partnerships or collaborations; barriers and successes were also probed. Data were compiled by site, reported using descriptive statistics, or grouped thematically. Supports were described using the AIMD (Aims, Ingredients, Mechanism, Delivery) framework.ResultsThirty-one respondents from 17 sites across seven provinces represented a 49% site response rate. Eleven (65%) sites reported an on-site library with variable staffing and services. Ten (59%) sites reported a dedicated KT support unit or staff person. Supports ranged from education, resource development and consultation to protocol development, funded initiatives and collaborations. Organizations leveraged internal and external supports, with the majority also employing supports for clinical research integration. Supports perceived as most effective included personnel, targeted initiatives, leadership, interdepartmental expertise, external drivers and logistical support. Barriers included operational constraints, individual-level factors and lack of infrastructure.ConclusionsThis first survey of organizational supports for EIHC/KT identified the range of supports in place in paediatric research and health care organizations across Canada. The diversity of supports reported across sites may reflect differences in resource capacity and objectives. Similarities in EIHC/KT and research integration supports suggest common infrastructure may be feasible. Moreover, stakeholder engagement in research was common, but not pervasive. Tailored support programmes can target multi-faceted barriers. Findings can inform the development, refinement and evaluation of EIHC/KT support programmes and guide the study of the effectiveness and sustainability of these strategies.

How far does an emphasis on stakeholder engagement and co-production in research present a threat to academic identity and autonomy? A prospective study across five European countries

Abstract There is a growing recognition that needs more to be done to ensure that research contributes to better health services and patient outcomes. Stakeholder engagement in research, including co-production, has been identified as a promising mechanism for improving the value, relevance and utilization of research. This article presents findings from a prospective study which explored the impact of stakeholder engagement in a 3-year European tobacco control research project. That research project aimed to engage stakeholders in the development, testing and dissemination of a return-on-investment tool across five EU countries (the Netherlands, Spain, Hungary, Germany and the UK). The prospective study comprised interviews, observations and document review. The analysis focused on the extent to which the project team recognized, conceptualized and operationalized stakeholder engagement over the course of the research project. Stakeholder engagement in the European research project was conceptualized as a key feature of pre-designated spaces within their work programme. Over the course of the project, however, the tool development work and stakeholder engagement activities decoupled. While the modelling and tool development became more secluded, stakeholder engagement activities subtly transformed from co-production, to consultation, to something more recognizable as research participation. The contribution of this article is not to argue against the potential contribution of stakeholder engagement and co-production, but to show how even well-planned engagement activities can be diverted within the existing research funding and research production systems where non-research stakeholders remain at the margins and can even be seen as a threat to academic identify and autonomy.

Expect the unexpected? Challenges of prospectively exploring stakeholder engagement in research

Stakeholder engagement in research is increasingly viewed as making a major contribution to assisting impact. This paper draws on a longitudinal, prospective impact study exploring stakeholder engagement in a 3-year tobacco control research project which used stakeholder engagement in the development, testing and dissemination of its return on investment tool. The paper presents the challenges of data collection when undertaking prospective research on stakeholder engagement in health-related research. The impact study used mixed methods of data collection to explore stakeholder engagement in the target project, comprising surveys, interviews and observations of meetings and events involving stakeholders. Stakeholder engagement that actually occurred in the target project, and the data collection methods of stakeholder engagement that were actually used in the impact study, varied substantially from those intended in each case. Data collection for the impact study was dependent on the target project’s stakeholder engagement, which became substantially reduced. Modifications to data collection for the impact study were required. One of the reasons for the reduction of stakeholder engagement was linked to constraints on the target project to meet non-negotiable deadlines. Another factor was concerns about overburdening stakeholders. The knock-on effect of reduced stakeholder engagement highlighted the impact study’s lack of control over its data collection, which was related to the prospective nature of the study. The authors acknowledge that an advantage of a retrospective approach over a prospective one is researchers knowing about data availability and accessibility from the outset. However, the prospective approach of the impact study enabled insight into stakeholder engagement in real-time: how and when it occurred, the challenges, and the experiences of stakeholders and the target project researchers. While the quantity of data gathered was considerably less than anticipated, the quality of data was rich and enabled the impact study objectives to be achieved. With increasing emphasis on public engagement in research and calls for engagement to be evaluated for impact, this paper aims—by highlighting the challenges the impact study experienced—to provide some insight to future research that seeks to respond to those calls.

Assessment of Stakeholder Engagement in a Down Syndrome Research Study

There is growing recognition of the importance of engaging patients early in the design of research studies. For studies involving patients with intellectual and cognitive disabilities, researchers may consider engaging with family caregivers, health professionals, community advocates, and/or subject matter experts to provide a more multifaceted, surrogate perspective. Evaluating the engagement of these stakeholder groups in research is nascent, and tools are limited. Research studies involving these individuals provide the opportunity to test new methods of measurement of stakeholder engagement in research. We conducted a 3-year research study implementing and evaluating Down Syndrome Clinic to You, an online platform for caregivers of individuals with Down syndrome who do not have access to Down syndrome specialists. We established 3 key stakeholder groups - family caregivers, primary care physicians, and medical/scientific experts in the field - who were involved from grant-writing through preparation of the final report. To assess stakeholder engagement, we utilized the Patient Engagement in Research Scale, a validated instrument originally developed to evaluate patient engagement in arthritis research. Overall, results were suggestive of strong engagement levels by the key stakeholder groups. This study contributes to the limited available literature evaluating measures of stakeholder engagement in research.

Patient Engagement in Research Design and Implementation: Moving From Infancy to Adolescence

Patient (also referred to as User or Older Adult) engaged research is a unique approach to research design, implementation, and dissemination. The practice of engaged research, in its broader sense, involves service recipients, caregivers, clinicians, and other stakeholders in prioritization of research questions, approach, and practice translation to ensure strong stewardship of funds, valid and reliable methods, and practical application. Patient engaged research also aligns with tenets of person-centered care in the inclusive nature and the expectation that the practice will improve the processes and the outcomes of research. Likewise, GSA’s focus on diversity of thought through interdisciplinary work strongly aligns with inclusion of patient and stakeholder voices in the performance of interdisciplinary research. Although patient and stakeholder engagement in research is a new approach for many, globally, funders increasingly require evidence of “meaningful” engagement in project proposals. In the United States, the Patient-Centered Outcomes Research Institute (PCORI) is well-known for funding engaged research and the National Institute on Aging (NIA) has demonstrated use of “collaborative” methods central to patient engagement within the IMPACT Collaboratory. Patient engagement literature, while growing, does not yet provide adequate guidance for replication of current or development of new approaches to patient engagement in research. Therefore, the purpose of this symposium is to frame patient engagement through a historic lens (Roes) and discuss the ethics of engagement (O’Sullivan). In addition, we will share program outcomes from three patient engagement programs: the Leading Age LTSS Center, Rural Patient & Stakeholder Engagement, and Sages in Every Setting. Patient/Person Engagement in Research Interest Group Sponsored Symposium.