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Researching Health Together: Engaging Patients and Stakeholders, From Topic Identification to Policy Change

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Abstract

Researching Health Together brings together authors who have produced innovative methodologies or implemented projects focused on different stages of the research process, from question development to evaluation and translation. Editor Emily B. Zimmerman gathers exemplary new methods and projects into one place for the benefit of students designing research projects and proposals, those learning stakeholder-engaged methods, and those involved in implementing and funding stakeholder-engaged projects. Each chapter addresses: how engagement was conceptualized, organized, and implemented; how engagement was evaluated; impacts on processes and outcomes of the project; and facilitators, barriers, and lessons learned. The book serves as a core textbook for courses in community-based health research at the graduate level. To order, call SAGE Customer Service at 1-800-818-7243 "An important text presenting the interface between community engagement and translational research."-Lutchmie Narine, Syracuse University "Drawing upon diverse conceptual models and empirical case studies, this book offers exciting, cutting-edge ideas in this rapidly growing field. A must-have for researchers and practitioners."-Jennifer Chan, University of British Columbia "The book provides a coherent narrative through a progression of "building blocks" for understanding how research and policies can interface to benefit the quality of life of individuals and entire communities."-Marcello Maviglia, University of Michigan School of Medicine
ISBN: 9781544351063
February 2020 | 424 pages
Paperback Price: $85
Edited by Emily B. Zimmerman
Virginia Commonwealth University, USA
Researching
Health Together
Engaging Patients and Stakeholders from
Topic Identification to Policy Change
Researching Health Together brings together authors who have produced
innovative methodologies or implemented projects focused on different stages of the
research process, from question development to evaluation and translation. Editor
Emily B. Zimmerman gathers exemplary new methods and projects into one place
for the benefit of students designing research projects and proposals, those learning
stakeholder-engaged methods, and those involved in implementing and funding
stakeholder-engaged projects. Each chapter addresses: how engagement was
conceptualized, organized, and implemented; how engagement was evaluated;
impacts on processes and outcomes of the project; and facilitators, barriers, and
lessons learned. The book serves as a core textbook for courses in communi ty-
based health research at the graduate level.
To order, call SAGE Customer Service at 1-800-818-7243
“An important text presenting the interface between community engagement and
translational research.Lutchmie Narine, Syracuse University
“Drawing upon diverse conceptual models and empirical case studies, this book offers
exciting, cutting-edge ideas in this rapidly growing field. A must-have for researchers and
practitioners.Jennifer Chan, University of British Columbia
“The book provides a coherent narrative through a progression of "building blocks" for
understanding how research and policies can interface to benefit the quality of life of
individuals and entire communities.” Marcello Maviglia, University of Michigan School of
Medicine
Table of Contents
Part 1. Stakeholder Engagement in Research Topi c Identifi cation and Mode ling
Chapter 1 Grassroots to Grasstops: A Stepwi se Approach to Identify Community Health Priorities
Chapter 2Delibe rative Engagement of Communities in Decisions About Re search Spending ( DECIDERS)
Chapter 3Group Model Building as a Community Engagement Strate gy
Chapter 4 The SEED Method: A Multi-Level Stakeholder Approach to Rese arch Question De velopment and
Prioritization
Part 2. Stakeholder Engagement In Research Design
Chapter 5 The Community Engage me nt Studio: Tapping Into the Live d Expe rience of Community Members
to Enhance Research
Chapter 6The History of PCORnet
Chapter 7Partners, Not Participants: Engaging Patients in the American BRCA Outcomes of Te sting (ABOUT)
Network
Chapter 8Engageme nt Methods for Practi ce-Based Research Networks and the Chall enges with Health
Information Technology Implementation
Part 3. Imple menting Stake holder-En gaged Res earch
Chapter 9 Free Range Humans: Engaging Patients, Practices, Providers, and Pe ople on the High Pl ai ns
Chapter 10 Engagi ng Stakehol ders in Implementation of Evidence-Based Programs
Chapter 11 Communities Engaged and Advocating for Smoke-F ree Env ironments (CEA SE)
Chapter 12 Transl ating Evide nce to Pol icy: A Case Study of the San Francisco Soda Tax
Part 4. Stakeholder Engagement In Health And Health Systems Interventions
Chapter 13 Comparative Ef fectiveness Research: Stake holder Engagement for a Comprehe nsive Perspective
Chapter 14 Achievi ng Patient Centered Health Care Innovation Through Stakeholder Engagement
Chapter 15 Community Engage ment in an Urban AIA N Communi ty to Address Di abetes Prevention
Chapter 16 Boot Cam p Transl ation
Part 5. Governance, Evaluation, And Ethics In Stakeholder-Engaged Research
Chapter 17 Buildi ng the P roper Foundation: Governance for Stakeholder-Eng aged Re searc h
Chapter 18 Evaluating Engagement: Does the Involvement of Stakeholders Improve Research?
Chapter 19 Col laborati ng to Ev aluate: The Tex as Partne rshi p-Centered Evaluation Model
Chapter 20 Ethics Considerations When Involving Patients as Partners in Health Rese arch
To order, call SAGE Customer Service at 1-800-818-7243

Supplementary resource (1)

... Given the role of feasibility studies to determine how programs can be more effectively implemented (24), we examined the feasibility and potential impact of a peermentoring smoking cessation program based in a public housing facility. The intervention adapted the structure, approach and curriculum of the Communities Engaged and Advocating for a Smoke-free Environment (CEASE), a well-established CBPR partnership in Baltimore Maryland (16,25,26). This intervention provided a valuable opportunity for a public housing complex to comply with the HUD initiative. ...
... A toolbox of resources used in the CEASE program was provided to the mentors to supplement the support they provided to the participants based on individual needs. The mentors were trained and supported during the course of the intervention by experienced CEASE Peer Motivators (16,25,26). ...
Article
Full-text available
Introduction Tobacco use disproportionately affects low-income African American communities. The recent public housing smoke-free policy has increased the demand for effective smoking cessation services and programs in such settings. Methods This mixed-method pilot study explored feasibility and potential impact of a peer-mentoring program for smoking cessation in a public housing unit. The quantitative study used a quasi-experimental design while qualitative data were collected via focus group discussions with peer mentors and participants. Three residents of the public housing complex were trained as peer mentors. Each peer mentor recruited up to 10 smokers in the residence and provided them individual support for 12 weeks. All participants were offered Nicotine Replacement Therapy (NRT). A follow-up investigation was conducted 3 months after completion of the 12-week intervention. At baseline and follow-up, the participants' smoking status was measured using self-report and was verified using exhaled carbon monoxide (eCO) monitoring. Results The intervention group was composed of 30 current smokers who received the peer-mentoring intervention. The control group was composed of 14 individuals. Overall mean eCO levels dropped from 26 ppm (SD 19.0) at baseline to 12 (SD 6.0) at follow-up ( P < 0.01). Participants who were enrolled in our program were more likely to have non-smoking eCO levels (<7 ppm) at follow-up (23.3%) compared to those who did not enroll (14.3%). Conclusion Our program is feasible for low-income predominantly African American communities. Using peers as mentors may be helpful in providing services for hard-to-reach populations. Given the non-randomized design of our study, randomized trials are needed to test the efficacy of our program in the future.
... Keywords: community-based; mental health; restorative; antiracism; CBPR; partnerships; community-academic partnerships; intervention planning C ommunity-based participatory research (CBPR) is an approach that facilitates conducting research and partnerships between academic research institutions and community-based organizations and entities (CBOEs). The aim of this approach is to develop and implement collaborative interventions that directly address the salient needs of communities Schulz et al., 1998;Zimmerman, 2020), with emphasis on those affected by health disparities (National Institute on Minority Health and Health Disparities, 2018). Community-academic partnerships benefit both partners by increasing funding for CBOEs to implement innovative multisector programs that bring diversity and inclusion to academic research institutions. ...
... Community-academic partnerships benefit both partners by increasing funding for CBOEs to implement innovative multisector programs that bring diversity and inclusion to academic research institutions. In academic research institutions, such diversity and inclusion help to make scientific research by those institutions more robust, offer students connections to community through service-learning programs that are grounded in real-world knowledge, and actively contribute to the improvement of local and national social conditions (Zimmerman, 2020). ...
Article
The COVID-19 pandemic has exacerbated the adverse influence of structural racism and discrimination experienced by historically marginalized communities (e.g., Black, Latino/a/x, Indigenous, and transgender people). Structural racism contributes to trauma-induced health behaviors, increasing exposure to COVID-19 and restricting access to testing and vaccination. This intersection of multiple disadvantages has a negative impact on the mental health of these communities, and interventions addressing collective healing are needed in general and in the context of the COVID-19 pandemic. The Share, Trust, Organize, and Partner COVID-19 California Alliance (STOP COVID-19 CA), a statewide collaborative of 11 universities and 75 community partners, includes several workgroups to address gaps in COVID-19 information, vaccine trial participation, and access. One of these workgroups, the Vaccine Hesitancy Workgroup, adopted an anti-racist community-partnered praxis to implement restorative circles in historically marginalized communities to facilitate collective healing due to structural racism and the COVID-19 pandemic. The project resulted in the development of a multilevel pre-intervention restorative process to build or strengthen community-institutional partnerships when procurement of funds has been sought prior to community partnership. This article discusses this workgroup's role in advancing health justice by providing a community-based mental health intervention to marginalized communities in Southern California while using an antiracist praxis tool to develop a successful community-institutional partnership and to live up to the vision of community-based participatory research.
... Defined by its research philosophy and the relationship between research partners rather than methodology, CEnR is now an established scholarly tradition in numerous disciplines including health sciences, the social sciences, social work, urban planning, education, and the arts. Teams using CEnR have implemented research projects addressing a wide range of stakeholder concerns; collaborated with partners across the research process [10][11][12][13], from problem identification to scaling evidence-based interventions [14]; transformed service learning with new curricula and pedagogies that reflect students' interests and learning styles [15]; and transformed natural, built, and artistic environments to better reflect the values and interests of communities [16]. ...
Article
Background Community-engaged research (CEnR) is a research approach in which scholars partner with community organizations or individuals with whom they share an interest in the study topic, typically with the goal of supporting that community’s well-being. CEnR is well-established in numerous disciplines including the clinical and social sciences. However, universities experience challenges reporting comprehensive CEnR metrics, limiting the development of appropriate CEnR infrastructure and the advancement of relationships with communities, funders, and stakeholders. Objective We propose a novel approach to identifying and categorizing community-engaged studies by applying attention-based deep learning models to human participants protocols that have been submitted to the university’s institutional review board (IRB). Methods We manually classified a sample of 280 protocols submitted to the IRB using a 3- and 6-level CEnR heuristic. We then trained an attention-based bidirectional long short-term memory unit (Bi-LSTM) on the classified protocols and compared it to transformer models such as Bidirectional Encoder Representations From Transformers (BERT), Bio + Clinical BERT, and Cross-lingual Language Model–Robustly Optimized BERT Pre-training Approach (XLM-RoBERTa). We applied the best-performing models to the full sample of unlabeled IRB protocols submitted in the years 2013-2019 (n>6000). Results Although transfer learning is superior, receiving a 0.9952 evaluation F1 score for all transformer models implemented compared to the attention-based Bi-LSTM (between 48%-80%), there were key issues with overfitting. This finding is consistent across several methodological adjustments: an augmented data set with and without cross-validation, an unaugmented data set with and without cross-validation, a 6-class CEnR spectrum, and a 3-class one. Conclusions Transfer learning is a more viable method than the attention-based bidirectional-LSTM for differentiating small data sets characterized by the idiosyncrasies and variability of CEnR descriptions used by principal investigators in research protocols. Despite these issues involving overfitting, BERT and the other transformer models remarkably showed an understanding of our data unlike the attention-based Bi-LSTM model, promising a more realistic path toward solving this real-world application.
... BCT has been used by partnerships of community members, academic researchers, and health professionals around the country on a range of health topics to translate medical information and clinical guidelines into concepts, messages, and materials that are understandable, meaningful, and engaging to community members and patients and disseminated in testable health interventions [21]. A full description of the standard BCT process has been previously reported [22]. ...
Article
Full-text available
Background Over 34 million people in the United States have diabetes, with 1.5 million diagnosed every year. Diabetes self-management education and support (DSMES) is a crucial component of treatment to delay or prevent complications. Rural communities face many unique challenges in accessing DSMES, including geographic barriers and availability of DSMES programs that are culturally adapted to rural context. Objective Boot Camp Translation (BCT) is an established approach to community-based participatory research used to translate complex clinical and scientific information into concepts, messages, and materials that are understandable, meaningful, and relevant to community members and patients. This study aimed to utilize BCT to adapt an existing DSMES program for delivery in rural primary care for English- and Spanish-speaking people with diabetes. Methods The High Plains Research Network (HPRN) Community Advisory Council (C.A.C.) partnered with researchers at the University of Colorado and University of Utah to use BCT to aid in translating medical jargon and materials from an existing DSMES program, called “Diabetes One Day (D1D).” BCT consisted of 10 virtual meetings over a 6-month period among the C.A.C., which included 15 diverse community stakeholders. Both English-speaking and bilingual Spanish-English–speaking C.A.C. members were recruited to reflect the diversity of the rural communities in which the adapted program would be delivered. Results The BCT process guided adaptations to D1D for use in rural settings (R-D1D). R-D1D adaptations reflect both content and delivery to assure that the intervention is appropriate and likely to be accepted by rural English- and Spanish-speaking people with diabetes. Additionally, BCT informed the design of recruitment and program materials and identification of recruitment venues. During the BCT process, the importance of tailoring materials to reflect culture differences in English- and Spanish-speaking patients was identified. Conclusions BCT was an effective strategy for academic researchers to partner with rural community members to adapt an existing DSMES intervention for delivery in rural areas to both English- and Spanish-speaking patients with diabetes. Through BCT, adaptations to recruitment materials and methods, program content and delivery, and supplemental materials were developed. The need to culturally adapt Spanish materials with input from stakeholders rather than simply translate materials into Spanish was highlighted. The importance of increasing awareness of the connection between diabetes and depression or diabetes distress, adaptations to include local foods, and the importance of the relationship between people with diabetes and their primary care practices were identified.
... One way this can be conducted is by employing principles of community-based participatory research (CBPR) in health research, which privileges the needs of patients, community members, and diverse stakeholders in research [58]. As we found in our review, two studies in engaged American Indian community members and other key stakeholders in decision making about the study design, incorporation of American Indian values and knowledge-based approaches, and development of intervention material [33,36]. ...
Article
Full-text available
Introduction: We examined the scope of literature including non-parental caregiver involvement in child obesity prevention interventions. Methods: We conducted a scoping review following the Arksey and O'Malley framework, including only studies reporting the effect of an intervention on growth, weight, or early childhood obesity risk among children ages 0 to three years, published between 2000 and 2021. Interventions that did not include non-parental caregivers (adults regularly involved in childcare other than parents) were excluded. Results: Of the 14 studies that met the inclusion criteria, all were published between 2013 and 2020, and most interventions (n = 9) were implemented in the United States. Eight of the 14 interventions purposefully included other non-parental caregivers: five included both parents and non-parental caregivers, and the remaining three included only non-parental caregivers. Most interventions (n = 9) showed no significant impact on anthropometric outcomes. All interventions found improvements in at least one behavioral outcome (e.g., food groups intake (n = 5), parental feeding practices (n = 3), and screen time (n = 2)). This review can inform future interventions that plan to involve non-parental caregivers, which may be beneficial in shaping early health behaviors and preventing obesity early in life.
... and "How do we effectively share these messages with the community?" [31]. The process relies on the community members' and researchers' unique expertise, experiences, and perspectives. ...
Article
Full-text available
Background: Diabetes self-management education and support (DSMES) is a crucial component of diabetes care associated with improved clinical, psychosocial, and behavioral outcomes. The American Association of Diabetes Care and Education Specialists, the American Diabetes Association, and the American Academy of Family Physicians all recommend DSMES yet accessing linguistically and culturally appropriate DSMES is challenging in rural areas. The Diabetes One-Day (D1D) program is an established DSMES group intervention that has not been adapted or evaluated in rural communities. Objective: The specific aims of this paper are (1) to adapt the existing D1D program for use in rural communities, called rural D1D (R-D1D); and (2) to conduct a patient-level randomized controlled trial to examine the effects of R-D1D and standard patient education, guided by the Reach, Effectiveness, Adoption, Implementation, and Maintenance framework. Methods: This is a protocol for a pilot type II hybrid implementation-effectiveness trial of a culturally adapted virtual DSMES program for rural populations, R-D1D. We will use Boot Camp Translation, a process grounded in the principles of community-based participatory research, to adapt an existing DSMES program for rural populations, in both English and Spanish. Participants at 2 rural primary care clinics (4 cohorts of N=16 plus care partners, 2 in English and 2 in Spanish) will be randomized to the intervention or standard education control. The evaluation is guided by the Reach, Effectiveness, Adoption, Implementation, and Maintenance framework. Patient-level effectiveness outcomes (hemoglobin A1c, diabetes distress, and diabetes self-care behaviors) will be assessed using patient-reported outcomes measures and a home A1c test kit. Practice-level and patient-level acceptability and feasibility will be assessed using surveys and interviews. Results: This study is supported by the National Institute of Nursing. The study procedures were approved, and the adaptation processes have been completed. Recruitment and enrollment started in July 2021. Conclusions: To our knowledge, this will be the first study to evaluate both effectiveness and implementation outcomes for virtually delivered DSMES, culturally adapted for rural populations. This research has implications for delivery to other rural locations where access to specialty diabetes care is limited. Trial registration: ClinicalTrials.gov NCT04600622; https://clinicaltrials.gov/ct2/show/NCT04600622. International registered report identifier (irrid): DERR1-10.2196/34255.
... Much of this work on supporting the use of research evidence focuses on improving relationships between different actors in the evidence system (Zimmerman 2020). This is often defined as linking with those with a 'stake' in the research, or 'stakeholders' (Boaz et al. 2018). ...
Article
Full-text available
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.
... This initiative draws on principles of community-based participatory research in health to engage multiple stakeholders (campus administrators, faculty, staff, students, the city, and county public health) and enact shared decision making and equitable resource allocation. 16,17 The goal is to infuse health into teaching, scholarship, business practices, and institutional policies in an effort to build a culture of health. ...
Article
Background: Institutions of higher education are increas- ingly attending to the health of their campus community. This article reports on a Healthy Campus Initiative (HCI) to build a culture of health. Objectives: Evaluate the applicability of the four action areas of the Robert Wood Johnson Foundation Culture of Health Framework to campus health and discuss challenges and lessons learned. Methods: Observational, qualitative, and quantitative data were collected to describe partnership development, key stakeholder engagement, and stakeholder perceptions of healthy campus activity between 2016 and fall 2018. Results: This initiative aligned with 3 of the four action areas of the Culture of Health Framework by making campus health as a shared value, fostering campus and local com- munity collaborations, and creating a healthier and more equitable campus community. Conclusions: For institutions of higher education, the Culture of Health Framework is ideal to engage stakeholders to take action to create and build cultures of health.
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An understanding of adult day service centers’ (ADC) impacts on clients’ health and well-being has been hampered by a lack of large-scale data. Standardizing data collection is critical to strengthening ADC programs, demonstrating their effectiveness, and enabling them to leverage additional funding streams beyond Medicaid. We distributed an electronic survey on current data collection efforts to ADCs nationally to determine categories of data ADCs are collecting related to clients’ health. In our sample ( N = 248), only 32% of ADCs collected patient-level data for research and analysis—most commonly on activities of daily living, cognition, nutrition, and caregiver strain. However, validated assessment tools were used in less than 50% of the cases. ADCs are willing to collect data: More than 70% reported a willingness to participate in future studies. National studies piloting data collection protocols with uniform outcome measures are needed to advance the understanding of ADCs’ capabilities and impacts.
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