Report on CTSA Consortium Use of the Community Engagement Consulting Service

Introduction

The CTSA Community Engagement Consultative Service (CECS) is a national partnership designed to improve community engaged research (CEnR) through expert consultation. This report assesses the feasibility of CECS and presents findings from 2008 to 2009.

Methodology

A coordinating center and five regional coordinating sites managed the service. CTSAs identified a primary previsit CE best practice for consultants to address and completed self‐assessments, postvisit evaluations, and action plans. Feasibility was assessed as the percent of CTSAs participating and completing evaluations. Frequencies were calculated for evaluation responses.

Results

Of the 38 CTSAs, 36 (95%) completed a self‐assessment. Of these 36 sites, 83%, 53%, and 44% completed a consultant visit, evaluation, and action plan, respectively, and 56% of the consultants completed an evaluation. The most common best practice identified previsit was improvement in CEnR (addressing outcomes that matter); however, relationship building with communities was most commonly addressed during consulting visits. Although 90% of the consultants were very confident sites could develop an action plan, only 35% were very confident in the CTSAs’ abilities to implement one.

Conclusions

Academic medical centers interested in collaborating with communities and translating research to improve health need to further develop their capacity for CE and CEnR within their institutions. Clin Trans Sci 2013; Volume 6: 34–39     

Community Engagement in the CTSA Program: Stakeholder Responses from a National Delphi Process

In response to the Institute of Medicine (IOM) Committee''s December 2012 public request for stakeholder input on the Clinical and Translational Science Award (CTSA) program, two nonprofit organizations, the Center for Community Health Education Research and Service, Inc. (CCHERS) and Community‐Campus Partnerships for Health (CCPH), solicited feedback from CTSA stakeholders using the Delphi method. Academic and community stakeholders were invited to participate in the Delphi, which is an exploratory method used for group consensus building. Six questions posed by the IOM Committee to an invited panel on community engagement were electronically sent to stakeholders. In Round 1 stakeholder responses were coded thematically and then tallied. Round 2 asked stakeholders to state their level of agreement with each of the themes using a Likert scale. Finally, in Round 3 the group was asked to rank the Round 2 based on potential impact for the CTSA program and implementation feasibility. The benefits of community engagement in clinical and translational research as well as the need to integrate community engagement across all components of the CTSA program were common themes. Respondents expressed skepticism as to the feasibility of strengthening CTSA community engagement.     

Understanding the Supports of and Challenges to Community Engagement in the CTSAs

Background

The Clinical and Translational Science Award (CTSA) program has raised the profile and the available funding for engagement in biomedical research. Such increased funding and attention may address known barriers to engagement. However, little work has been done to describe experiences across multiple CTSAs, especially how the CTSA structure supports or challenges engagement.

Objective

We sought to understand the supports and challenges experienced by multiple CTSAs as they pursued community engagement. This knowledge may help guide future efforts to support and enhance community engagement in biomedical research.

Methods

We conducted semi‐structured, in‐depth interviews with CTSA community engagement core leaders and staff from the 2006 cohort of CTSAs (n = 12).

Results

A total of 17 interviews with respondents from nine institutions identified three support themes, including: funding, existing relationships with communities, and leadership and a partnership approach at the institution. Six challenge themes arose: need for capacity development, lack of positive relationships with communities, lack of leadership, funding constraints, time and staff constraints, and unsustainable models.

Conclusion

The CTSAs have brought much‐needed attention to community engagement in research, but more can be done to adequately support engagement. Challenges remain that need to be addressed to achieve the potential benefits of engagement.     

Towards Building a Bridge between Community Engagement in Research (CEnR) and Comparative Effectiveness Research (CER)

A major national priority is establishing an effective infrastructure for translation of scientific discoveries into the community. Knowledge and practice continue to accelerate in health research yet healthcare recommendation adoption remains slow for practitioners, patients, and communities. Two areas of research placed in the later stages of the translational research spectrum, Community Engagement in Research and Comparative Effectiveness Research, are ideal for approaching this challenge collaboratively. The Clinical and Translational Science Institute of Southeastern Wisconsin convened academics and community‐based organizations familiar with these fields of research in a 1‐day workshop to establish an initial dialogue on similarities and differences with a goal of exploring ways to operationalize a collective effort. Participants represented four academic institutions and twelve other healthcare and community‐based service organizations. Primary fields of study included community engaged research, comparative effectiveness research, psychology, clinical research, administration, nursing, public health, education, and other professionals. This initial report outlines the results of this diverse discussion and provides insights into the priorities, diverging issues, and areas for future examination and practice. Key discoveries reveal clear crosscutting issues, value in philosophical and provocative discussions among investigators, a need for practice and lessons learned, and bidirectional exchange with community representation.     

Researching Together: A CTSA Partnership of Academicians and Communities for Translation

Background

The Colorado Clinical and Translational Sciences Institute (CCTSI) aims to translate discovery into clinical practice. The Partnership of Academicians and Communities for Translation (PACT) represents a robust campus–community partnership.

Methods

The CCTSI collected data on all PACT activities including meeting notes, staff activity logs, stakeholder surveys and interviews, and several key component in‐depth evaluations. Data analysis by Evaluation and Community Engagement Core and PACT Council members identified critical shifts that changed the trajectory of community engagement efforts.

Results

Ten “critical shifts” in six broad rubrics created change in the PACT. Critical shifts were decision points in the development of the PACT that represented quantitative and qualitative changes in the work and trajectory. Critical shifts occurred in PACT management and leadership, financial control and resource allocation, and membership and voice.

Discussion

The development of a campus–community partnership is not a smooth linear path. Incremental changes lead to major decision points that represent an opportunity for critical shifts in developmental trajectory. We provide an enlightening, yet cautionary, tale to others considering a campus–community partnership so they may prepare for crucial decisions and critical shifts. The PACT serves as a genuine foundational platform for dynamic research efforts aimed at eliminating health disparities.     

Faculty Participation in and Needs around Community Engagement within a Large Multiinstitutional Clinical and Translational Science Awardee

Community engagement is recommended to ensure the public health impact of NIH‐funded science. To understand the prevalence of community‐engaged research and faculty interest in and needs around this, from 2012 to 2013, an online survey (n = 3,022) was sent to UCLA Clinical and Translational Science Institute faculty. Among respondents, 45% reported community‐engaged project participation in the last year and 64% an interest in learning about community‐engaged research. Over 50% indicated career development and pilot grants would increase participation in community‐engaged research. A greater percentage of pretenure than tenured faculty (pretenure 54.9%, tenured 42.2%, p = 0008) noted faculty promotion criteria incentivizing community‐engaged research would increase participation. In adjusted analyses, African American (OR 4.06, CI 1.68–9.82, p = 0.002) and Latino (OR 1.91, CI 1.10–3.33, p = 0.022) faculty had higher odds of prior participation in community‐engaged projects than Whites. Female faculty had greater odds of interest (OR 1.40, CI 1.02–1.93, p = 0.038) in learning about community‐engaged research than males. African American (OR 4.31, CI 1.42–13.08, p = 0.010) and Asian/Pacific Islander (OR 2.24, CI 1.52–3.28, p < 0.001) faculty had greater interest in learning about community‐engaged research than Whites. To build community‐engaged faculty research capacity, CTSAs’ may need to focus resources on female and minority faculty development.     

Community Member and Faith Leader Perspectives on the Process of Building Trusting Relationships between Communities and Researchers

In the first phase of this research, we conducted, audio‐recorded, and transcribed seven focus groups with more than 50 English‐ or Spanish‐speaking women of childbearing age. Qualitative analysis revealed the following themes: (1) expectation that participation would involve relationships based on trust that is built over time and impacted by cultural factors; (2) perceived characteristics of research staff that would help facilitate the development of trusting relationships; (3) perceptions about the location of the visits that may affect trust; (4) perceptions of a research study and trust for the institution conducting the study may affect trust; (5) connecting the study to larger communities, including faith communities, could affect trust and willingness to participate. In the second phase of this research, we conducted, recorded, transcribed, and analyzed interviews with leaders from diverse faith communities to explore the potential for research partnerships between researchers and faith communities. In addition to confirming themes identified in focus groups, faith leaders described an openness to research partnerships between the university and faith communities and considerations for the formation of these partnerships. Faith leaders noted the importance of finding common ground with researchers, establishing and maintaining trusting relationships, and committing to open, bidirectional communication.     

Evaluating the Development,Implementation and Dissemination of a Multisite Card Study in the WWAMI Region Practice and Research Network

Background

Practice‐based research networks (PBRNs) promote the conduct of research in real‐world settings by engaging primary care clinicians as champion research collaborators. Card studies are brief surveys administered to patients or clinicians at the point of care. The objective of this paper is to describe the design and evaluation of a card study methodology that the WWAMI Region Practice and Research Network (WPRN) used to develop research partnerships across multiple member sites.

Methods

We used a collaborative model to develop, implement and disseminate the results of a network‐wide card study to assess patient preferences for weight loss in primary care. After the card study data collection was completed, we conducted individual and focus group interviews and a brief survey of participating practice champions.

Results

Increased research engagement and personal and professional developments were the primary motivators for participating in the development of the card study. Increasing research activity at practices and learning information about patients were motivators for implementing the study. Their participation resulted in champions reporting increased confidence in collaborating on research projects as well as the development of new clinical services for patients.

Discussion

This collaborative model positively influenced research capacity in the WPRN and may be a useful strategy for helping PBRNs conducted translational research.     

Lessons from an Experiential Approach to Patient Community Engagement in Rare Disease

Meaningful engagement between biopharmaceutical companies and patient communities has increasingly become an important part of the therapeutic-development process, as such engagement improves the understanding of the multifaceted challenges and unmet needs that communities experience and provides an opportunity to inform the approach to the development of new therapies and services. Presented here are learnings from a community-advisor program designed to engage families of patients with Duchenne muscular dystrophy (DMD) in a manner that enabled caregivers to make valuable contributions to the therapeutic-development process and to the DMD community. Parents of children with DMD, representing the broader DMD community, were identified in partnership with patient-advocacy organizations and invited to participate in a community-advisor meeting with members of Wave Life Sciences. The community-advisor meeting was designed to provide participants with an opportunity to share their personal experiences with DMD, to help to inform the therapeutic-development process, and to identify potential solutions for addressing unmet needs. Three community-advisor meetings were held with a total of 30 parents, representing 36 children with DMD. Key themes that emerged from the advisors' discussion included the importance of the community's emotional and mental support, the inconsistencies in DMD care, the increased challenges and disparities faced by underserved communities, and the need for more comprehensive, holistic approaches to the treatment and management of DMD. The advisors viewed the meetings as an opportunity to share their voices with a biopharmaceutical company, coupled with the advantage of meeting other families living with similar challenges. Most of the advisors stated that this was their first advisor meeting. This community-focused approach empowered participants to voice their needs and perspectives, to brainstorm potential solutions for addressing those needs, and to initiate and foster connections in ways that had a considerable impact on one another and on therapeutic-development programs at Wave Life Sciences.     

Assessing Research Interest and Capacity in Community Health Centers

Objective

Community health centers (CHCs) have great potential to participate in the development of evidence‐based primary care but face obstacles to engagement in clinical translational research.

Methods

To understand factors associated with CHC interest in building research infrastructure, Harvard Catalyst and the Massachusetts League of Community Health Centers conducted an online survey of medical directors in all 50 Massachusetts CHC networks.

Results

Thirty‐two (64%) medical directors completed the survey representing 126 clinical sites. Over 80% reported that their primary care providers (PCPs) were slightly to very interested in future clinical research and that they were interested in building research infrastructure at their CHC. Frequently cited barriers to participation in research included financial issues, lack of research skills, and lack of research infrastructure. In bivariate analyses, PCP interest in future clinical research and a belief that involvement in research contributed to PCP retention were significantly associated with interest in building research infrastructure.

Conclusion

CHCs critical role in caring for vulnerable populations ideally positions them to raise relevant research questions and translate evidence into practice. Our findings suggest a high interest in engagement in research among CHC leadership. CTSAs have a unique opportunity to support local CHCs in this endeavor.     

Brokering Community Engagement: Proactive Strategies for Supporting Indigenous Australians with Mental Health Problems

This qualitative study explored the experiences of mental health employees working with Indigenous clients living with mental illness. Interviews were conducted with 20 mental health workers to identify strategies they adopt to facilitate community engagement with Indigenous clients. Using a thematic analysis approach, ‘Brokering community engagement’ was the umbrella theme from which two subthemes related to community engagement for the service and clients emerged (1) enabling connections –community and family; and (2) recovery and reconnecting with community. Participant insights enabled a deeper understanding of the role of community in the recovery process for Indigenous clients and highlight the importance of community engagement as a primary, yet multifaceted strategy used by mental health workers in the communities they serve.     

Facilitating Emergency Care Research Networks: Integration into the Clinical Translational and Science Award (CTSA) Infrastructure

Emergency care research (ECR) does not fit neatly into the traditional National Institutes of Health (NIH) funding model, because emergency research involves undifferentiated disease presentations involving multiple disciplines and time-sensitive interventions. A task force of emergency care researchers and other stakeholders was convened to discuss the present and future state of clinical research networks. Integration of ECR with the Clinical Translational and Science Award (CTSA) program through a multidisciplinary emergency care research network (ECRN) would obviate the duplication of research efforts by disease-specific or institute-specific multicenter networks and reduce startup and maintenance costs. Strategies to enhance integration must include the training of emergency physician investigators in biostatistical and epidemiologic methods, as well as educating collaborative investigators in emergency care–related methodologies. Thus, an ECRN would be of great benefit to CTSA awardees and applicants and should be considered a priority.     

Community Outreach and Engagement Strategies from the Wisconsin Study Center of the National Children's Study

The purpose of this methods article was to describe and evaluate outreach and engagement strategies designed to initially build county‐wide awareness and support for the National Children's Study (NCS or the study) and subsequently to target the segment communities where recruitment for the study occurred. Selected principles from community outreach, social marketing, and health care system and personal referral formed the foundation for the strategies. The strategies included a celebration event, community advisory board, community needs assessment, building relationships with health care providers and systems, eliciting a network of study supporters, newsletters, appearances at local young family‐oriented events (health fairs, parades), presentations to local community leaders, community forums, “branding” with assistance from a women‐owned local marketing firm, and mailings including an oversized, second‐touch postcard. Six months after study launch, approximately 4,600 study‐eligible women were asked in a door‐to‐door survey if and how they became aware of the study. On average, 40% of eligible women reported being aware of the study. The most frequently cited strategy to cultivate their awareness was study‐specific mailings. Awareness of the NCS increased by 7.5% among those receiving a second‐touch postcard relative to controls (95% CIs [4.9, 10.7] z = 5.347, p < 0.0000, d = 0.16). Community outreach and engagement strategies, in particular the oversized postcard as a second‐touch effort, may be used effectively by researchers for participant recruitment and by public health nurses for delivery of important population‐focused messages.     

Concocting that Magic Elixir: Successful Grant Application Writing in Dissemination and Implementation Research

Background

This paper reports core competencies for dissemination and implementation (D&I) grant application writing and provides tips for writing a successful proposal.

Methods

Two related phases were used to collect the data: a card sorting process among D&I researchers and an expert review among a smaller set of researchers. Card sorting was completed by 123 respondents. In the second phase, a series of grant application writing tips were developed based on the combined 170 years of grant review experience of the writing team.

Results

The card sorting resulted in 12 core competencies for D&I grant application writing that covered the main sections in a grant application to the US National Institutes of Health: (a) specific aims that provide clear rationale, objectives, and an overview of the research plan; (b) significance that frames and justifies the importance of a D&I question; (c) innovation that articulates novel products and new knowledge; and (d) approach that uses a relevant D&I model, addresses measurement and the D&I context, and includes an analysis plan well‐tied to the aims and measures.

Conclusions

Writing a successful D&I grant application is a skill that can be learned with experience and attention to the core competencies articulated in this paper.     

Unpacking Medical Students’ Mixed Engagement in Health Systems Science Education

Abstract

Phenomenon: Medical education is better aligning with the needs of health systems. Health systems science competencies, such as high-value care, population health, and systems thinking, are increasingly being integrated into curricula, but not without challenges. One challenge is mixed receptivity by students, the underlying reasons of which have not been extensively explored. In this qualitative study, we explored the research question: “How do students perceive health systems science curricula across all four years, and how do such perceptions inform the reasons for mixed quality ratings?” Approach: Following large-scale health systems science curricular changes in their medical school, we used students’ open-ended comments obtained from course evaluations related to 1^st-, 2^nd-, and 4^th-year courses and performed a qualitative thematic analysis to explore students’ perceptions. We identified themes, synthesized findings into a conceptual figure, and agreed upon results and quotations. Findings: Five themes were identified: (1) perceived importance and relevance of health systems science education, (2) tension between traditional and evolving health systems science-related professional identity, (3) dissatisfaction with redundancy of topics, (4) competition with basic and clinical science curricula, and, (5) preference for discrete, usable, testable facts over complexity and uncertainty. The relationship between themes is described along a continuum of competing agendas between students’ traditional mindset (which focuses on basic/clinical science) and an emerging medical education approach (which focuses on basic, clinical, and health systems science). Insights: Health systems science education can be viewed by learners as peripheral to their future practice and not aligned with a professional identity that places emphasis on basic and clinical science topics. For some students, this traditional identity limits engagement in health systems science curricula. If health systems science is to achieve its full potential in medical education, further work is required to explore the adoption of new perspectives by students and create activities to accelerate the process.     

Evaluating Various Areas of Process Improvement in an Effort to Improve Clinical Research: Discussions from the 2012 Clinical Translational Science Award (CTSA) Clinical Research Management Workshop

Emphasis has been placed on assessing the efficiency of clinical and translational research as part of the National Institutes of Health (NIH) goal to “improve human health.” Improvements identified and implemented by individual organizations cannot address the research infrastructure needs of all clinical and translational research conducted. NIH''s National Center for Advancing Translational Sciences (NCATS) has brought together 61 Clinical and Translational Science Award (CTSA) sites creating a virtual national laboratory that reflects the diversity and breadth of academic medical centers to collectively improve clinical and translational science. The annual Clinical Research Management workshop is organized by the CTSA consortium with participation from CTSA awardees, NIH, and others with an interest in clinical research management. The primary objective of the workshop is to disseminate information that improves clinical research management although the specific objectives of each workshop evolve within the consortium. The fifth annual workshop entitled “Learning by doing; applying evidence‐based tools to re‐engineer clinical research management” took place in June 2012. The primary objective of the 2012 workshop was to utilize data to evaluate, modify, and improve clinical research management. This report provides a brief summary of the workshop proceedings and the major themes discussed among the participants.     

Dissemination,Implementation, and Improvement Science Research in Population Health: Opportunities for Public Health and CTSAs

Importance

The complex, dynamic nature of health systems requires dissemination, implementation, and improvement (DII) sciences to effectively translate emerging knowledge into practice. Although they hold great promise for informing multisector policies and system‐level changes, these methods are often not strategically used by public health.

Objectives and Methods

More than 120 stakeholders from Southern California, including the community, federal and local government, university, and health services were convened to identify key priorities and opportunities for public health departments and Clinical and Translational Science Awards programs (CTSAs) to advance DII sciences in population health.

Main Outcomes

Participants identified challenges (mismatch of practice realities with narrowly focused research questions; lack of iterative learning) and solutions (using methods that fit the dynamic nature of the real world; aligning theories of change across sectors) for applying DII science research to public health problems. Pragmatic steps that public health and CTSAs can take to facilitate DII science research include: employing appropriate study designs; training scientists and practicing professionals in these methods; securing resources to advance this work; and supporting team science to solve complex‐systems issues.

Conclusions

Public health and CTSAs represent a unique model of practice for advancing DII research in population health. The partnership can inform policy and program development in local communities.