Chapter 1

Leading from Within

Creating a Culture of Health through Leadership and Community-Grown Solutions

Lina Svedin

University of Utah

Introduction

The stories recounted in this volume are profound illustrations and reflections on the intersectionality of health, wealth, and disparity as well as community generated solutions to these conditions.

The chapters discuss health statuses, symptoms, and consequences in communities, in both urban and rural environments. They talk about the impacts of structural deficits and inequality, structural violence and structural racism. They talk about what that looks like, how it takes expression in families, in schools, across communities and neighborhoods, in small towns, and across mountain regions. Several stories talk about the lack of access to needed and significant healthcare. They also discuss the need for hope, skill building, leadership, and examples of how to get out of poverty and violence. The stories the authors convey tell us about the need for action, commitment, and attention to detail to teach young people, community members, and families to take action to improve their condition, to ask for what they need, to build for themselves, and to share with others.

The contributors to this volume talk about the need to be living examples of community action, organizing, and educating in order to reduce disparities in health, increase access and community resources. They also share how they themselves served as examples and what their experiences of community organizing, building, and resourcing has been like. These culture of health leaders have built networks of people and groups that take action and create public goods to improve their own lives and that of the community in which they live.

This volume is part of a larger series of books on interdisciplinary community-engaged research for health, and this book represents a practitioner’s view on community engagement and how we can build a culture of health through community-grown solutions.

The Culture of Health Leaders Program

The Robert Wood Johnson Foundation (RWJF) has been committed to improving health and healthcare for over forty years. The foundation provides county health rankings with resources to for evidence-based strategies for improving health behaviors to the social determinants of health (County Health Rankings & Roadmaps 2019a) on its web page. Beyond the full report of county health rankings, there is a report called “What Works? Social and Economic Opportunities to Improve Health” (County Health Rankings & Roadmaps 2019b). It goes step-by-step into bona fide methods for improving education, social supports, health, and equity across the United States. The commitment by the foundation led to the establishment of four national programs to build a culture of health in the United States.

The Robert Wood Johnson Foundation’s Culture of Health program (Culture of Health Leaders 2019) may be the most comprehensive and multifaceted method for tackling inequity in health outcomes to date. The focus on equity and working in and through communities is pivotal. That leading for health is a very hands-on action-oriented matter is clear from resources such as “What Works for Health Disparity Rankings” and “What Works for Health” shortcut strategy adoption guides that the Culture of Health Leaders program provides. These practice-oriented resources help policymakers—among others—make decisions that, at the very least, will decrease health disparities between ethnic, racial, socioeconomic, and geographic groups.

As recipients of the RWJF’s Culture of Health Leaders fellowships, the authors in this volume have received training, mentoring, and support. This program is an “opportunity for people working in every field and profession who want to use their influence to advance health and equity” to develop leadership skills. These practitioners have been trained “to collaborate and provide transformative leadership to address health equity in their communities” (Culture of Health Leaders 2019). The Culture of Health Leaders program has purposefully directed their support to include “representation from fields as diverse as business, technology, architecture, education, urban farming, the arts and many others” (Culture of Health Leaders 2019) and they seek to be ever-more inclusive in terms of representation “from fields and professions across the private, public, nonprofit and social sectors to build a truly diverse group of leaders” (Culture of Health Leaders 2019). As culture of health leaders, the authors are engaging in a three-year learning experience, “including individual and team-based projects that encourage innovation, discovery, and hands-on application” (Culture of Health Leaders 2019). They work with nontraditional partners to produce “health initiatives, engage authentically with communities to change systems and institutions, and share their professional and life experiences in support of other leaders and the field” (National Collaborative for Health Equity 2019). They have, through interaction with and guidance by “nationally recognized subject matter experts, mentors, and coaches,” started to “lead change within and among systems and institutions” (National Collaborative for Health Equity 2019).

Practitioners and Community Leaders Sharing to Pave the Way

The challenges to health, wellness, and health equity in the United State are massive. We face the long-term health impacts of structural racism, unequal access to education, safe housing and neighborhoods, income inequality, lack of mental healthcare and resources, multiple and repeated adverse childhood experiences, substance use disorders, high maternal and infant mortality rates, and actual declining years of life expectancy for women. We know, for instance, that “as income increases or decreases, so does health. Employment provides income that shapes choices about housing, education, child care, food, medical care, and more. Employment also often includes benefits that can support healthy lifestyle choices, such as health insurance. Unemployment and under employment limit these choices and the ability to accumulate savings and assets that can help cushion in times of economic distress” (County Health Rankings & Roadmaps 2019e).

The impact of current social determinants of health are significant and cumulative. However, as this volume showcases, we also have a growing number of hands-on ways to address the impact of these negative trends. “People with greater social support, less isolation, and greater interpersonal trust live longer and healthier lives than those who are socially isolated. Neighborhoods richer in social connections provide residents with greater access to support and resources than those that are less tightly knit” (County Health Rankings & Roadmaps 2019c). We also know now from a dearth of data that “individuals with more education live longer, healthier lives than those with less education, and their children are more likely to thrive” and that “this is true even when factors like income are taken into account” (County Health Rankings & Roadmaps 2019d) . We have a growing set of community-fostered solutions to disparities on the ground and community-led efforts to buck the trend of worsening population health trends and address the conditions that allow inequality to fester.

Among the organizations and persons doing this work, a select group of individuals have been given the resources and training to grow as culture of health leaders. Most of the authors in the volume are deeply embedded in the communities they talk about; they are of the communities and for the communities they live and work in. Many of them have faced the adversities that they are now working to address. As practitioners, community leaders, and culture of health pioneers, they lead from within.

The work the authors exemplify and talk about is hard. That is, it is not easy to do but it is frequently simple and it can be done—and it is always, always—community centered. The community-based solutions and innovations they talk about are powerful and they show us how they did it so we can do it. These men and women share their experience as leaders doing important culture of health work to empower others to try this in their own communities. The authors’ stories convey what sometimes seem like insurmountable challenges of intricate and complex situations that affect people’s health and make the struggle come alive for those of us who want to change these circumstances. The authors show us how we can take steps to do that, to avoid some pitfalls they have explored and how we can utilize what they have found helpful and effective.

Methods for Community-Engaged Work

The definition of community-engaged research in the series that this volume is a part of is a collaboration between community members and researchers where resources and knowledge is exchanged through a reciprocal partnership to the benefit of both. While the core goals “of community-engaged research are action, impact, and community benefit” (Jacquez and Svedin 2020), the results are not always forthcoming. Many researchers avoid community-engaged work because it is messy and emotionally challenging. It frequently flies in the face of a clean, easily controlled, clearly measurable work process. It commonly veers away from the outlined research plan and protocol, making it far less likely to yield clear-cut results and neat stacks of statistics to be analyzed in a well-lit sterile environment. The strengths of controlled clinical trials, however, is what they add to things, such as precision medicine. There is absolutely a need for this type of clinical science but it is not easily adapted to a community environment and open to community input.

People are doing community-engaged research in almost every academic field but the terms assigned to describe this work vary. Some call it action research or participatory action research; others call it civic engagement or community-engaged scholarship. Others still discuss community-engaged research in terms of consumer engagement or community-based participatory research (CBPR) as they try to improve healthcare and health outcomes by partnering with those affected. What these efforts have in common is the determination to match the knowledge and methodology expertise of researchers with the local expertise and lived experiences of community members and to foster this cross-disciplinary collaboration in support of change. Community-academic partnerships may vary in their degree of collaboration—ranging from cooperation to coordination to collaboration to partnership. Each gradient of collaboration suggests more equity in leading and making decisions about the nature of the partnership and the range of activities it practices (Winer and Ray 2000).

One of the advantages of community-engaged research is that we get “the benefits of shared leadership between community and academic partners” (Jacquez and Svedin 2020), which is essential to owning the understanding of the challenges themselves as well as empowering communities to address those challenges moving forward. Even the National Institutes of Health (NIH) have underlined “the amplified impact, flow, and communication that comes with enhancing collaboration” (Jacquez and Svedin 2020) throughout the research process. Specifically, the NIH posit that shared leadership increases the potential for broader benefits in health outcomes, larger community impact, and stronger bidirectional trust built as a foundation for future collaboration.

Community-engaged research is customary in disciplines targeting a diverse set of outcomes, particularly with regards to health, but the emergence of community engagement as a key to research and impact has really taken off over the last decade. Several leading international organizations, such as the World Health Organization, now emphasize the necessity of community participation in order to accomplish population health improvements and eventually reaching health equity (WHO Regional Office for Europe 2012; WHO 2016). A number of research funding organizations and mechanisms now also seem to be following this lead by requiring community-engaged research in successful grant proposals—for example, the NIH’s Clinical and Translational Science Award (CTSA) program and the Patient-Centered Outcomes Research Institute (PCORI).

Working toward Change in Communities

Many people, inside and outside of visible communities, are working toward change. In this sense, we are not alone in our passion for community-engaged leadership for health. The astonishing prevalence and persistence of health inequities resulting from structural inequality in the United States is motivating researchers and institutions that fund research to pursue new ways to impact social equity across a wide variety of sectors.

Traditionally, health promotion and health improvement interventions have been institution led, “expert” driven, and address one specific aspect of health and well-being. In order to really make a dent in persistent health inequity, however, many different kinds of stakeholders need to come to the table, contributing their experience and resources. This includes, but is in no way limited to, researchers from different fields joining forces and forging their skills together for translational science. Whatever research is going to happen also needs to happen in a true partnership with community collaborators. This partnership cannot just be a connection at the top, with team leaders and directors agreeing to work together, it has to be an immersive process where those who are experiencing the inequity are respected experts and integral to the design of any research project, intervention, or possible solution.

Working in communities and across stakeholder groups and interests though collaborative processes may sound ideal, but reality too frequently places obstacles in the way of real change. Well-intentioned efforts can be derailed by a lack of funding, legislative support, organizing capacity, or compassion fatigue. Sometimes even those who work closely toward a common goal do not use the same terms to describe who they serve, what they are working toward, or what the needs of the community are. At a deeper level, stakeholders and the communities they represent can have very different goals, beliefs, and values, making their understanding of the challenges facing the community and what needs to change very different. “In order to work together toward health equity, there is a need not only to recognize the importance of collaboration but also to have the tools and vision to understand how to carry it out” (Jacquez and Svedin 2020).

Like those scholars from a wide range of disciplines who would like to engage in community-engaged research, passionate but resource-constrained practitioners have relatively few high-quality sources to turn to for methodological advice and best practices when it comes to leading and succeeding for health in communities.

The Outline of This Volume

The chapters in this volume cover the work of embedded health leaders and the communities they are working within. In chapter 2, “Cultivating Health in Appalachia,” Emily Jackson explores how, as a schoolteacher, she stumbled across a startling disconnect between the children in her school and the rural land around them that grew the food they ate. This disconnect spurred Emily to start an evolving and expanding set of programs that connected schools, teachers, students, parents, and neighbors to growing and cooking fresh food. Through innovative programming Jackson showcases how she has been able to engage multiple communities in Appalachia with healthy foods and a respect for the land and people that grow the food.

In chapter 3, “Saving Rural America, Starting with One Girl,” Michael Howard outlines his vision for saving rural America. Using anecdotes and examples from rural Kentucky he guides and illuminates our understanding of how social determinants of health intersect with a healthcare system in a small mining town. Far from being pessimistic, Howard uses the causal linkages between poverty, poor health outcomes, and high-cost healthcare to envision a different way of addressing health care needs—though community strengths, compassion, and the removal of social determinants of poor health.

In chapter 4, “Network Strategies and Cross-Collaboration to Strengthen Community Food Systems,” Tina Tamai takes us to rural Hawaii and communities facing scarcity of affordable fresh fruit and vegetables. She explains how building a network of networks has increased access to fresh food and has spread education about healthy cooking and eating while honoring and preserving ethnic food culture. The work of Hawaii’s Good Food Task Force and Network has been pioneering and is increasing in size and scope across the island communities.

In chapter 5, One Community, Two Voices,” Shannon McGuire and Jean Mutchie account for the development of cross-sector collaboration in order to create a culture of health in Nampa, a fast-growing city in Idaho. Their story showcases how pockets of poverty in Treasure Valley have led to significant inequality in community health status. Working with data down the census tract in Nampa, the authors identified areas of real impoverishment and lack of access to healthcare and transportation and have built a local stakeholder network to reduce childhood obesity. Through collaboration, innovation, and community engagement Nampa has managed to increase access to healthy foods and healthcare and increase mobility in an area with disproportionate rates of childhood obesity and poor health.

In chapter 6, “EMBRacing Community-Engaged Research: Engaging, Managing, and Bonding through Race Intervention,” Monique McKenny and Riana Anderson recount their work with black families aimed to reduce racial stress and trauma and increase resilience among African American children. Using a positive psychological framework focused on coping skills, cultural affirmation, and strengthening parent-child relationships, the authors work to help children meet the stress of negative cultural stereotypes, discrimination, and racism that is still pervasive in the United States. By running EMBRace as a mental health and wellness intervention for African American families in West Philadelphia, McKenny and Anderson attempt to reduce the impact of racial stress and trauma on families today and in the future.

In chapter 7, “Rebuilding Affrilachia,” DeWayne Barton discusses his work to rebuild Affrilachia, restore black Ashville—particularly the Barton Street neighborhood where he lives—to a healthy thriving community. Starting by picking up picking up trash, engaging youth, and building a peace garden together with his wife, Barton has moved the community to action, rallied for space to be restored and preserved, and has pulled sustainability into this community’s culture. From repairing the neighborhood community center, to rallying community members young and old to fight divisive city projects, to convincing businesses to support green opportunities for youth, Barton exemplifies the extraordinary things that are possible when passionate people start doing a few simple things.

In chapter 8, “The Evolution of Health and Housing for One Community-Based Organization,” Robert Torres discusses how supportive affordable housing in Boston has developed its efforts to improve health and self-sustainability among its residents. Torres’s work reflects genuine commitment to building individual and community stability and sustainability. However, even with the best intentions, well-laid plans do not always work out. Their experience include learning the importance of listening, clarifying assumptions, and working with community members to build solutions to problems they experience, and this experience was integral to Urban Edge’s success story.

In chapter 9, “Building Collaboration for Community Health,” Lina Svedin pulls together a set of key themes uncovered in the preceding chapters. Some of these are lessons learned and ways to forward that work. Others are reminders of issues to take be taken seriously and problems that may lead to reassessment as individuals and communities work toward change. Drawing out tools and techniques that the authors and health leaders in this volume have used successfully in their communities, the concluding chapter places stepping stones on the road to community-led change.

                We hope that you will be inspired and informed by the accounts of leading for health collected in this book. We bring these examples to light to serve as roadmaps for how to create a culture of health from within communities. We know that it is possible, and we hope that by reading though the authors’ stories you will also be convinced.

References

County Health Rankings & Roadmaps. 2019a. “County Health Rankings.” University of Wisconsin Population Health Institute in collaboration with the Robert Wood Johnson Foundation. http://www.countyhealthrankings. org/take-action-to-improve-health/what-works-for-health.

County Health Rankings & Roadmaps.  2019b. “What Works? Social and Economic Opportunities to Improve Health.” Wisconsin Population Health Institute in collaboration with the Robert Wood Johnson Foundation. http://www.countyhealthrankings.org/what-works-social-and-economic-opportunities-to-improve-health-for-all.

County Health Rankings & Roadmaps.  2019c. “Family and Social Support.” Wisconsin Population Health Institute in collaboration with the Robert Wood Johnson Foundation. http://www.countyhealthrankings.org/exp lore-health-rankings/what-and-why-we-rank/health-factors/social-and-economic-factors/family-and.

County Health Rankings & Roadmaps. 2019d. “Education.” Wisconsin Population Health Institute in collaboration with the Robert Wood Johnson Foundation. http://www.countyhealthrankings.org/explore-health-rankings/what-and-why-we-rank/health-factors/social-and-economic-factors/education.

County Health Rankings & Roadmaps. 2019e. “Income.” Wisconsin Population Health Institute in collaboration with the Robert Wood Johnson Foundation. http://www.countyhealthrankings.org/explore-health-rankings/what-and-why-we-rank/health-factors/social-and-economic-factors/education.

Culture of Health Leaders. 2019. Robert Wood Johnson Foundation. http://cultureofhealth-leaders.org/about-the-program/.

Jacquez, Farrah, and Lina Svedin. 2020. “Community-Engaged Research to Improve Health and Well-Being for Young Children." In Community-Academic Partnerships for Early Childhood Health, edited by Farrah Jacquez and Lina Svedin, 1–20. Cincinnati, OH: University of Cincinnati Press.

National Collaborative for Health Equity. 2019. http://www.nationalcollaborative.org/our-programs/culture-of-health-leaders/.