Community Leadership Institute for Equity: Planning Processes and Procedures to Develop Partnered Conferences.

BACKGROUND: Community-partnered participatory research (CPPR) is a research approach that supports equitable collaboration of community and academic co-leaders in research and policy. Despite CPPR's 25-year history, infrastructure supporting community members in bidirectional learning has not been formalized. OBJECTIVE: This paper describes processes and procedures using CPPR to plan conferences to develop community leadership training infrastructure. METHODS: We utilized rapid ethnographic analysis to examine conference planning processes for community leadership in CPPR. Community and academic leaders in Los Angeles, New Orleans, and Chicago met weekly over two months to plan, given COVID-19, three Zoom conferences on a leadership training institute for CPPR, with planning for (1) community co-leadership in research and policy; (2) local and national CPPR programs; and (3) models for bidirectional training. RESULTS: The planning process emphasized bidirectional learning for community and academic members for research and services/policy to benefit communities, within a Community Leadership Institute for Equity (C-LIFE) to promote equity and power sharing for community leaders. The planning process identified major themes of framing of C-LIFE conference planning goals, developing the conference structure, promoting equity and diversity, envisioning the future of CPPR, challenges, collaborations, future curriculum ideas for C-LIFE, evaluation and next-steps for Zoom conferences in November 2020. CONCLUSIONS: It was feasible to use CPPR to plan Zoom conferences to promote community leadership training across multiple sites. Key planning themes included promoting equity, addressing structural racism, bidirectional learning and integrating community, academic, and policy priorities with community co-leaders as change agents.

What's in This For You? What's in This For Me?: A Win-Win Perspective of Involving Study Advisory Committee Members in Palliative Care Research.

Study advisory committees (SACs) provide critical value to clinical trials by providing unique perspectives that pull from personal and professional experiences related to the trial's healthcare topic. The Emergency Medicine Palliative Care Access (EMPallA) study had the privilege of convening a 16-person SAC from the project's inception to completion. The study team wanted to understand the impact this project had on the SAC members. In this narrative, we use reflective dialogue to share SAC members' lived experiences and the impact the EMPallA study has had on members both personally and professionally. We detail the (1) benefits SAC members, specifically patients, and caregivers, have had through working on this project. (2) The importance of recruiting diverse SAC members with different lived experiences and leveraging their feedback in clinical research. (3) Value of community capacity building to ensure the common vision of the clinical trial is promoted.

Advancing patient-centered research practices in a pragmatic patient-level randomized clinical trial: A thematic analysis of stakeholder engagement in Emergency Medicine Palliative Care Access (EMPallA).

BACKGROUND: Involving patient and community stakeholders in clinical trials adds value by ensuring research prioritizes patient goals both in conduct of the study and application of the research. The use of stakeholder committees and their impact on the conduct of a multicenter clinical trial have been underreported clinically and academically. The aim of this study is to describe how Study Advisory Committee (SAC) recommendations were implemented throughout the Emergency Medicine Palliative Care Access (EMPallA) trial. EMPallA is a multi-center, pragmatic two-arm randomized controlled trial (RCT) comparing the effectiveness of nurse-led telephonic case management and specialty, outpatient palliative care of older adults with advanced illness. METHODS: A SAC consisting of 18 individuals, including patients with palliative care experience, members of healthcare organizations, and payers was convened for the EMPallA trial. The SAC engaged in community-based participatory research and assisted in all aspects from study design to dissemination. The SAC met with the research team quarterly and annually from project inception to dissemination. Using meeting notes and recordings we completed a qualitative thematic analysis using an iterative process to develop themes and subthemes to summarize SAC recommendations throughout the project's duration. RESULTS: The SAC convened 16 times between 2017 and 2020. Over the course of the project, the SAC provided 41 unique recommendations. Twenty-six of the 41 (63%) recommendations were adapted into formal Institutional Review Board (IRB) study modifications. Recommendations were coded into four major themes: Scientific, Pragmatic, Resource and Dissemination. A majority of the recommendations were related to either the Scientific (46%) or Pragmatic (29%) themes. Recommendations were not mutually exclusive across three study phases: Preparatory, execution and translational. A vast majority (94%) of the recommendations made were related to the execution phase. Major IRB study modifications were made based on their recommendations including data collection of novel dependent variables and expanding recruitment to Spanish-speaking patients. CONCLUSIONS: Our study provides an example of successful integration of a SAC in the conduct of a pragmatic, multi-center RCT. Future trials should engage with SACs in all study phases to ensure trials are relevant, inclusive, patient-focused, and attentive to gaps between health care and patient and family needs. TRIAL REGISTRATION: Clinicaltrials.gov Identifier: NCT03325985, 10/30/2017.

Clinical research should involve patient and community stakeholder perspectives to make sure the study addresses questions important to the studied population. One way to do this is by creating a group of stakeholders who can advise on the conduct of a study. We assembled a Study Advisory Committee (SAC) for the Emergency Medicine Palliative Care Access (EMPallA) trial. The purpose of this clinical trial is to compare the effectiveness of nurse-led telephonic case management and specialty, outpatient palliative care of older adults with advanced illness. This paper describes how the SACs involvement translated into direct impacts on the EMPallA trial. The trial research team held regular meetings with the SAC throughout the trial process. Their involvement led to many significant changes in the trial, such as  expanding recruitment inclusion criteria (Spanish-speaking patients), and including survey instruments to measure lonelines and caregiver burden. The SAC also devised strategies to overcome patient and caregiver recruitment and retention challenges, including the creation of patient-friendly materials and training for research coordinators. This study provides a successful example of how actively engaging patient and community stakeholders, through committee engagement, can promote patient priorities in all phases of a trial while facilitating patient recruitment and retention.

Using Community-Partnered Participatory Research to Value the "Community Lens" and Promote Equity in Community-Academic Partnerships.

Background: Community input is crucial for identifying characteristics necessary for equitable, sustainable community-academic partnerships (CAPs). A November 2021 conference, honoring the late Dr. Loretta Jones and the Community-Partnered Participatory Research (CPPR) model, was held to gather input for designing a learning institute for community members as co-equal partners with academics in research, program, and policy initiatives. This created an opportunity to explore attendees' perspectives on challenges and opportunities related to CAPs with special focus on promoting equity. Methods: Institutional Review Board approval was obtained. Five break-out discussion group sessions were conducted in November 2021 co-facilitated by both an academic and a community leader. After consent, discussions were recorded and transcribed. An iterative procedure for collaborative-group-thematic-analysis was developed. The six-phase process included rigorous coding, discussion, comparison of data with data, and development and refinement of themes and subthemes. Results: A total of 38 racial-ethnically diverse participants volunteered from the total conference audience of 62 community and academic partners from various sectors including community-based organizations, health care, social services, academia, or policy within Los Angeles County. Analysis led to development of three themes: Being cautious with the extractive tendency of academia and the need for anti-racism within CAPs; Leveraging community power to resist the top-down lens of academia; and bridging two worlds through an equitably structured table. Discussion: Participants described optimism about the future uses of CPPR to enhance CAPs, and the need to address barriers to equitable partnerships owing to unequal social contexts and entrenched power dynamics. Implications include addressing racism, evaluating financial equity in partnerships to promote accountability, and mentoring community leaders to promote equity. Conclusion: Use of a "community lens" for developing sustainable, equitable CAPs is crucial to promote accountability and to responsibly implement authentic CPPR.

Life Events, Barriers to Care, and Outcomes Among Minority Women Experiencing Depression: A Longitudinal, Mixed-Method Examination.

ABSTRACT: The long-term course of depression is not well-understood among minority women. We assessed depression trajectory, barriers to depression care, and life difficulties among minority women accessing health and social service programs as part of the Community Partners in Care study. Data include surveys ( N = 339) and interviews ( n = 58) administered at 3-year follow-up with African American and Latina women with improved versus persistent depression. The majority of the sample reported persistent depression (224/339, 66.1%), ≥1 barrier to mental health care (226/339, 72.4%), and multiple life difficulties (mean, 2.7; SD, 2.3). Many barriers to care ( i.e. , related to stigma and care experience, finances, and logistics) and life difficulties ( i.e. , related to finances, trauma, and relationships) were more common among individuals reporting persistent depression. Results suggest the importance of past experiences with depression treatment, ongoing barriers to care, and negative life events as contributors to inequities in depression outcomes experienced by minority women.

Pragmatic Considerations in Incorporating Stakeholder Engagement Into a Palliative Care Transitions Study.

BACKGROUND: Stakeholder involvement in health care research has been shown to improve research development, processes, and dissemination. The literature is developing on stakeholder engagement methods and preliminarily validated tools for evaluating stakeholder level of engagement have been proposed for specific stakeholder groups and settings. OBJECTIVES: This paper describes the methodology for engaging a Study Advisory Committee (SAC) in research and reports on the use of a stakeholder engagement survey for measuring level of engagement. METHODS: Stakeholders with previous research connections were recruited to the SAC during the planning process for a multicenter randomized control clinical trial, which is ongoing at the time of this writing. All SAC meetings undergo qualitative analysis, while the Stakeholder Engagement Survey instrument developed by the Patient-Centered Outcomes Research Institute (PCORI) is distributed annually for quantitative evaluation. RESULTS: The trial's SAC is composed of 18 members from 3 stakeholder groups: patients and their caregivers; patient advocacy organizations; and health care payers. After an initial in-person meeting, the SAC meets quarterly by telephone and annually in-person. The SAC monitors research progress and provides feedback on all study processes. The stakeholder engagement survey reveals improved engagement over time as well as continued challenges. CONCLUSIONS: Stakeholder engagement in the research process has meaningfully contributed to the study design, patient recruitment, and preliminary analysis of findings.

Growing a Community-Academic Partnership: Lessons Learned in Forming a Qualitative Interview Team for the Community Partners in Care Study.

By engaging, partnering, and building trust with community members, research on vulnerable populations may offer opportunities to improve population health in communities that suffer from health disparities. While the literature on participatory and partnered approaches offers techniques and strategies for forming community-academic partnerships, less information is available about how partnerships can grow and evolve over time. In this article, we describe the expansion of a long-standing partnership that uses principles of community partnered participatory research (CPPR), a variant of community-based participatory research (CBPR). We outline the preparation and executive phases of conducting qualitative interviewing with highly vulnerable study participants who have already been participants in a longitudinal survey. We describe the challenges and concerns at each phase of the research and summarize some lessons learned. To grow and evolve, the partnership must constantly be reaffirmed in the experiences of new members.

Participatory Technology Development to Enhance Community Resilience.

Objective: To assess the feasibility of a novel, partnered technology development process to co-create mobile health applications (apps) addressing community health priorities, using psychoeducation of cognitive behavioral therapy (CBT) principles for enhancing resilience as an example. Design: Stakeholder engagement, workgroups, pilot feasibility study using mixed methods during October 2013 through January 2016 over three phases: 1) defining the vision of the project and increasing technical capacity, 2) co-development and pilot testing of the app, and 3) planning for sustainability. Setting: An academic-community partnership in South Los Angeles, California. Participants: Eight stakeholders; 30 pilot participants from the community. Main Outcome Measures: Qualitative analysis of audio-recordings of the app development process and stakeholder interviews, surveys of stakeholders' perception of the development process, app use data, and feedback from pilot participants. Results: The participatory technology development process resulted in creation and pilot-testing of a resiliency-focused text messaging app. Of the 1,107 messages sent, 23 out of 30 (77%) app users responded to explore interactive content. Stakeholders reported increased perceived competency in creating mobile apps and that the process fostered a culture of co-leadership. There was also sustained engagement in mobile app development by stakeholders beyond the initial project period. Conclusions: This is the first study, to our knowledge, to demonstrate the feasibility of participatory technology development, an approach involving direct participation in the development, tailoring and maintenance of a mobile app by a broad set of stakeholders with high representation from racial/ethnic minorities from an under-resourced community. Participatory technology development is a promising approach for creating sustainable, relevant and engaging health technologies across different technological, clinical and community settings.

Dissemination and Implementation of Shared Decision Making Into Clinical Practice: A Research Agenda.

Shared decision making (SDM) is essential to advancing patient-centered care in emergency medicine. Despite many documented benefits of SDM, prior research has demonstrated persistently low levels of patient engagement by clinicians across many disciplines, including emergency medicine. An effective dissemination and implementation (D&I) framework could be used to alter the process of delivering care and to facilitate SDM in routine clinical emergency medicine practice. Here we outline a research and policy agenda to support the D&I strategy needed to integrate SDM into emergency care.

Adapting Conceptual Frameworks for Patient Engagement in Emergency Department Research.

For many people the emergency department (ED) is the first point of access to healthcare for acute needs and a recurring location for many with chronic healthcare needs. While the ED is well placed to identify unmet needs it can also be a net that people slip through when faced with uncoordinated and expensive healthcare challenges. Thus the ED has a responsibility to set patients on a safe and meaningful care trajectory, which can only be done in consultation and partnership with the patients themselves. The purpose of this article is to present crucial aspects of patient engagement that are essential for future research to foster an environment of colearning and respect that encourages ongoing involvement by patients, families, and staff.

The Role of Education in the Implementation of Shared Decision Making in Emergency Medicine: A Research Agenda.

Shared decision making (SDM) is a patient-centered communication skill that is essential for all physicians to provide quality care. Like any competency or procedural skill, it can and should be introduced to medical students during their clerkships (undergraduate medical education), taught and assessed during residency training (graduate medical education), and have documentation of maintenance throughout an emergency physician's career (denoted as continuing medical education). A subgroup representing academic emergency medicine (EM) faculty, residents, content experts, and patients convened at the 2016 Academic Emergency Medicine Consensus Conference on SDM to develop a research agenda toward improving implementation of SDM through sustainable education efforts. After developing a list of potential priorities, the subgroup presented the priorities in turn to the consensus group, to the EM program directors (CORD-EM), and finally at the conference itself. The two highest-priority questions were related to determining or developing EM-applicable available tools and on-shift interventions for SDM and working to determine the proportion of the broader SDM curriculum that should be taught and assessed at each level of training. Educating patients and the community about SDM was also raised as an important concept for consideration. The remaining research priorities were divided into high-, moderate-, and lower-priority groups. Moreover, there was consensus that the overall approach to SDM should be consistent with the high-quality educational design utilized for other pertinent topics in EM.

Engaging the Community in the Dissemination, Implementation, and Improvement of Health-Related Research.

To help maximize the real-world applicability of available interventions in clinical and community healthcare practice, there has been greater emphasis over the past two decades on engaging local communities in health-related research. While there have been numerous successful community-academic partnered collaborations, there continues to be a need to articulate the common barriers experienced during the evolution of these partnerships, and to provide a roadmap for best practices that engage healthcare providers, patients, families, caregivers, community leaders, healthcare systems, public agencies and academic medical centers. To this end, this paper presents a summary of a forum discussion from the 2014 Southern California Dissemination, Implementation and Improvement (DII) Science Symposium, sponsored by the University of California Los Angeles (UCLA) Clinical Translational Science Institute (CTSI), University of Southern California (USC) CTSI, and Kaiser Permanente. During this forum, a diverse group of individuals representing multiple constituencies identified four key barriers to success in community-partnered participatory research (CPPR) and discussed consensus recommendations to enhance the development, implementation, and dissemination of community health-related research. In addition, this group identified several ways in which the over 60 NIH funded Clinical and Translational Science Institutes across the country could engage communities and researchers to advance DII science.