Community Conceptualizations of Health: Implications for Transdisciplinary Team Science
Objective: This exploratory study set out to identify how communities in the Tufts University Clinical Translational Science Institute (CTSI) catchment area define health-related research priority areas.
Methods: Three focus groups comprising community stakeholders were conducted in three communities. Participants were representatives from community-based organizations and health centers. A systematic content analysis was performed that involved the identification, labeling, and categorization of data followed by thematic analysis.
Results: Participant conceptualizations of health and health priorities were not formulated in the context of specific disease conditions, such as diabetes, obesity, cardiovascular disease, or asthma. Instead, participants described contextual factors including social, environmental, economic, and political conditions that influence health and health behavior.
Conclusions: Respondents in the Tufts University CTSI catchment area, like many diverse urban communities, described multiple interconnected social determinants of health and well-being. As such, they were interested in research that focuses on “upstream” areas of intervention as opposed to disease prevention at the individual level. In addition, respondents were interested in research that would catalyze community change. Clin Trans Sci 2011; Volume 4: 163–167
Engaging communities in research is an effective strategy for community health improvement as it provides practitioners and researchers with data to inform the development of targeted health interventions and research. Community research engagement can facilitate the establishment of trust, mutual respect, and understanding between academic researchers and community stakeholders.1,2 In addition, engagement has the power to spark research that is transformative, innovative, and challenging to the status quo.2–5 Finally, community-engaged inquiry can facilitate the translation of research into both practice and policy.4,6 As such, community engagement is essential to the work of Clinical Translational Science Award (CTSA) centers that are charged with improving the “efficiency and speed” of clinical and translational research. Until recently, however, much of the focus has been on the first phase of translation,7 and only a small percentage of CTSA resources have been directed to community engagement.
Recognizing the importance of community in the translation of research into practice and policy, the Center for Aligning Researchers and Communities for Health (ARCH), the community engagement component of the Tufts University Clinical and Translational Science Institute (CTSI), implemented an exploratory research study to examine community health priorities identified by stakeholders from Tufts University CTSI catchment area neighborhoods. This paper describes the study findings and implications for CTSA sites.
The Tufts University CTSI was established in August 2008 with funding from the National Center for Research Resources (NCRR), National Institutes of Health (NIH).8 The Tufts CTSI is committed to engaging local communities in biomedical research and has included a variety of stakeholders representing multiple community interests in its work.8 Between March and May of 2009, ARCH researchers set out to collect exploratory data in three of its primary catchment areas in order to understand how these communities conceptualize clinical and translational research, and how they define health-related research priority areas. The overall goal of the study was to inform CTSI activities and community engagement efforts, as well as inform strategies for approaching community outreach and partnership. The three communities targeted were Somerville, Boston’s Chinatown neighborhood, and the Roxbury/Dorchester neighborhoods of Boston, all host communities to Tufts University institutions. In addition, these communities comprise diverse racial, ethnic, and socioeconomic populations, which are disproportionately impacted by health disparities. Participatory models of research, in which communities are actively engaged in the research process through partnerships with academic institutions, have become central to the national prevention research agenda, as articulated by the NIH,9 the Institute of Medicine (IOM),10 and the Centers for Disease Control and Prevention (CDC).11 Academic-community partnerships in metropolitan areas like these are being launched in an effort to address the disproportionate burden of chronic diseases among urban residents, particularly persons of color.12–14
The City of Somerville is home to the Tufts University Schools of Arts and Sciences and Engineering. Somerville is a community of approximately 77,500 residents settled on four square miles of land, making it the most densely populated city in New England.15 Historically, Somerville has been referred to as a gateway community for new immigrants to the United States. Like other Massachusetts communities and similar to the rest of the state, new migrants to Somerville are largely from Latin America, the Caribbean, and Asia. Twenty-nine percent of Somerville residents are foreign born and 35% speak a language other than English.15 Following a similar trend seen across US cities, immigrants in Somerville are over-represented in poverty and are overwhelmingly young.15
Boston’s Chinatown is a neighborhood that is home to the Tufts University Schools of Medicine, Nutrition, Dentistry, and Biomedical Sciences, as well as Tufts Medical Center, an affiliated hospital. As a neighborhood, Chinatown is much smaller and more densely populated than the city of Somerville with just over 6,000 residents living on two-tenths of a square mile. Fifty-six percent of the Chinatown population is foreign born and 62% reported speaking a language other than English, primarily Chinese dialects. Sixty-nine percent of residents are Asian. The majority of Chinatown residents are renters (98%), and over a third (37%) live in poverty.16
Dorchester and Roxbury are two adjacent Boston-area neighborhoods that fall into the medical center catchment area. According to the Census 2000, the most recent population data available for these communities, the total population of Dorchester (North and South) was 128,503. In South Dorchester, black residents made up 48% of the population, while Latinos and Asians accounted for 8.3% and 5.8% of South Dorchester residents, respectively. About three-fourths of South Dorchester residents were born in the United States with the remaining born in Puerto Rico, Vietnam, Ireland, Haiti, and other English- and Spanish-speaking Caribbean islands.17 In North Dorchester, 43.3% of residents were black, 18.3% were white, 16.7% were Latino, and 9.1% were Asian. About three-fourths of residents in North Dorchester were born in the United States with the remaining born in Vietnam, Haiti, and other English- and Spanish-speaking Caribbean islands.17 The total population of Roxbury in 2000 was 50,349. While Blacks made up 52% of local residents, Roxbury is home to the second largest Latino population in the City of Boston.17 Both Roxbury and Dorchester share the disproportionate burden of housing and food insecurity. In 2008, 56.7% of all foreclosures in Boston occurred in the communities of Roxbury, Dorchester, and Mattapan, another urban neighborhood in Boston.18 Residents of North Dorchester and of Roxbury had the highest rates of nonfatal assault-related gunshot and stabbing injuries among all Boston neighborhoods in 2007, twice the rate for Boston overall.18
Approved by the Tufts University Health Sciences Institutional Review Board, this study employed qualitative research methods to explore how members of Tufts University host communities conceptualize health and determine community health priorities. The three focus groups with community stakeholders were facilitated by a single person and were conducted in English. Participants were representatives from diverse community-based organizations and community health centers and included 3 men and 13 women. Although skewed, gender representation here is in line with that of the field, given that 70% of public health graduates and 85% of social work graduates are women.19 Of the participants the majority, 12, had completed between 2 and 4 years of college and the remaining four reported graduate study.
The snowball sampling technique, a nonprobable qualitative recruitment approach, was employed. Participants included staff and volunteers at community-based service and grassroots advocacy organizations, including community health centers. Participants were 18 years and older and fluent in English. At the onset of each focus group, the facilitator administered consent forms and reviewed the ground rules and study procedure. The duration of the group meetings was between 1/2 and 2 hours. Upon culmination, participants were provided with $25.00 for taking part in the study.
Questions included in the focus group script were designed to elicit health priority areas as identified by community stakeholders. The focus group script and questions were collaboratively developed by ARCH researchers and CTSI community partners to assure the appropriateness of the measure, which was then implemented by a community-based researcher from a CTSI partner organization. Participants were asked to talk about the health issues affecting their communities.
Each session was audiotaped and then transcribed in Microsoft Word. The transcripts were uploaded into MaxQDA, for data management and analysis. A systematic content analysis was performed by three coders that involved the identification, labeling, and categorization of data followed by thematic analysis. The coding was then compared and a logical analysis was performed by looking for patterns of difference, as well as similarities among the data themes. A final written summary, which contained a synthesis of the results were analyzed both collectively and individually and discussed and further contextualized by members of the ARCH leadership team.
Participant conceptualizations of health and health priorities were not formulated in the context of specific disease conditions, such as diabetes, obesity, cardiovascular disease, or asthma. Instead, participants described a myriad of interconnected and overlapping contextual factors including social, environmental, economic, and political conditions that shape individual living environments, interact with genetic predispositions, and influence health behavior. In the paragraphs that follow, examples from each of the groups are presented and discussed.
Chinatown—Participants reported that Chinatown residents are disproportionately impacted by asthma. However, while asthma has physiological roots, participants perceived societal factors to be key contributors to disease outcomes. Focus group members agreed that poverty, overcrowding, poor quality housing stock, traffic, and a lack of green space contributed to the disproportionate asthma disease burden experienced by residents. One participant stated:
With the proximity of all this traffic and highways close to Chinatown, my understanding is that the children of Chinatown have high rates of asthma. Growing up in a congested area with lots of traffic is not going to help your asthma. And, in terms of the housing stock itself, I have no idea what the insides of the apartments look like. I don’t know if there’s anything in there, the venting system, the ducting systems, the carpets, rugs, anything that causes or aggravates asthma. [001FGC]
While this participant stressed living environment, a second focused on the role of political power, or lack thereof, in shaping living environments.
I would say a lack of political power. Because, umm, I think that, like they want to build highways…the community lacked the political power to stop it or change it. …Why does this community have such low paying jobs…Why don’t we have open space? Why is the housing stock poor? A lot of it relates to how our community relates to the city, also to the state and also to other communities. [001FGC]
These factors led participants to emphasize the importance of health-related research that leads to more than just knowledge but to community change. As one participant summarized: You have to think about bringing change rather than just entertaining your knowledge, oh ok, this is good to know, but I think it has to be something like… do something to make use for research.[001FGC]
Somerville—Participants in Somerville were focused on the role of health care access, particularly the impact of health care disparities on health. Access was described in a multifaceted perspective. One participant reported on the cost of health care and the lack of appointment availability for poor people:
I think it’s actually accessing health care, and if they don’t have the money to access it and they don’t have the dollars to put down at the present time, they can not get the health care, that’s a new concept. Dollars down, you know, you pay so much for a visit if you come in and as we said the long wait. It takes a long time to get the appointment. And by that time they may miss the appointment then they have to wait another six months to get an appointment. [002FGS]
Given the sheer size of the immigrant community in Somerville, documentation and immigration status was of concern to all the participants in this focus group and the issue of access was particularly salient for immigrant families. Issues of access tied into issues of immigration status and employment:
In this community, we have a lot of undocumented families and parents. Children are documented because they were born in the US or in this area. And I believe that there is so much public outrage about illegal aliens….Whatever they do, they can’t get employment because the employer will be fined. They get very little health care because they only have Mass Health for emergencies. [002FGS]
Beyond issues related to access to care and immigration, Somerville participants also described homelessness and the quality of housing as health-related concerns. One participant described the impact of chronic homelessness on health and health behavior:
In the last ten to fifteen years, there has been talk about high cost of taking care of chronically homeless people, the high costs of emergency services of various kinds. I’m sure there is an ultimate high cost of people neglecting their health because they are not being able to get health care. So, crunching those numbers in some ways and say that it would actually be cheaper to insure everyone than to have them end up in whatever situation. I guess prevention is always cheaper. [002FGS]
In thinking about the ways in which research might be used to address health-related concerns, participants described research that was focused on the social determinants of health as opposed to disease-specific areas. For example, one participant stated:
A really specific example is the housing development where I work at. There is a lot of mold….At one meeting, we [the CBO] had one woman was saying that she had to bring her son to the hospital six times because of his asthma. If there was some kind of research so we could say ‘look at your neglect of the conditions in these apartments,’ it’s causing this much damage. That would be really powerful. …I think that asthma research itself is good, it’s good to know for knowledge, you know, for people to know the problem and how severe or not severe the problem is. But I think in order for the research itself to bring change…to address the root of the problem, it has to be connected. [002FGS]
Roxbury/Dorchester—Dorchester and Roxbury participants, like those in the previous groups, were not focused as much on disease as they were on community level factors that influence health and well-being, specifically violence, addiction, and housing barriers. Participants further identified poverty as a precursor to these three community health issues. With respect to violence, one participant reported:
In my community the biggie is violence…I think with the issue of violence, in particular, relates to lack of opportunities, even lack of knowledge as to where opportunities may be. The result is that there is frustration, there is anger built up and the only outlet seems to be a violent response. And all that is manifested by access to guns, drugs and the formation of gangs. [003FGB]
Addiction and access to housing also were identified as factors that lead to poor health. One participant stated that, “Housing, homelessness and addictions are the biggest problems.”[003FGB] Another shared that, “…the lack of healthy and affordable housing, really contributes to both health and mental health issues and a variety of other negative things people shouldn’t have to deal with.”[003FGB]
Overall, participants felt that change was needed, that research need reflect community conceptualizations of health-related priorities and that research should involve community participation. As reported by one participant:
The concern I have about research in general is: all this research out there that’s really very clinical. We need to have a change here. I think there needs to be more of a balance of research that is more community based and participatory. So that the issues come out of communities as opposed to coming from academics or clinical or medical institutions. [003FGB]
These exploratory data suggest that community stakeholders in the Tufts University area were more likely to identify socioeconomic determinants of health as areas of concern compared to specific diseases. Traffic congestion, housing stock and availability, as well as, access to health care, immigration status, political power, poverty, addiction, and violence were all identified as factors either individually or in combination, that were directly and/or indirectly influencing the communities’ health and well-being. Communities in the Tufts University CTSI catchment area, like many diverse urban communities, described multiple interconnected social determinants of health and well-being. Respondents were interested in research that focused on “upstream” areas of intervention as opposed to disease prevention at the individual level. In addition, communities wanted research that helped to solve these problems as opposed to simply describing them.
Concerns across these communities displayed some differences, often reflecting unique characteristics of the communities themselves. In Chinatown, the geographic compactness and closeness to highways drove many of the respondents’ comments. In Somerville participants, despite their focus on health care, were concerned about traditionally underserved populations such as undocumented residents and the chronically homeless, two populations with little political power. A very different set of health issues permeated the discussions with Roxbury/Dorchester community representatives, although themes of powerlessness to surmount poverty were also apparent. For all three communities, solutions were framed within the context of societal responses with less attention paid to the care of the individual patient.
This study employed a snowball sampling methodology to explore community conceptualizations of health and health priority areas. Although, this method is appropriate for exploratory research, caution should be taken as findings are not intended to be generalized. In addition, the perceptions of staff and volunteers from community-based organizations and health centers, not those of residents, were examined. Future explorations should include resident conceptualizations as well to explore the extent to which they are congruent with those of organizations serving the residents. Finally, we looked specifically at staff from community-based organizations and community health centers, given the focus of our work. However, the results, centered on the broader determinants of health, indicate that discussions on additional community sectors may be informative.
Despite its limitations, this study has two significant implications. First, in this sample, stakeholder views were consistent with the literature, which recognizes multiple interconnected determinants of population health and well-being, as well as variation across and within communities.20 Moreover, community groups in this sample were also interested in research that served to direct change. CTSA sites, such as Tufts University, are well poised to engage in research that addresses these broader societal health issues, as they span the breadth and depth of the university and greater community. Although these sites are in a position to link clinical, health services, social science researchers, and community partners, their capacity to do so may be limited if community-engaged research is not seen as a priority for CTSA sites. Models of research based on the principles of community-based participatory research and participatory action research embrace an interactive approach with the community that specifically seeks topics to study from the community and identifies power issues and change as a part of the research process.1–2 However, these types of approaches are often difficult to promote within traditional medical institutions and universities due to partnership and institutional barriers.21 CTSA sites need to determine whether their definitions of clinical and translational science include research that addresses the social determinants of health and explore community-driven, population-based solutions in addition to more standard biomedical research and clinical studies that focus on the individual patient.
Second, our findings parallel the call for increased transdisciplinary team science inherent in the CTSA sites’ missions and embraced by the NIH in its strategic plan.22 Team science is particularly appropriate for addressing the “multifactorial” causes of community health problems. According to Stokols et al.,23 transdisciplinary research involves “an integrative process in which researchers work jointly to develop and use a shared conceptual framework that synthesizes and extends discipline-specific theories, concepts, methods to create new models and language to address a common research problem” p. S79. By working in teams inclusive of diverse disciplinary perspectives including psychology, public health, urban planning, engineering, sociology, and community partners, the complex factors that determine the health and well-being of communities are more likely to be addressed. Transdiciplinary teams can draw upon a range of skills from biomedical disciplines and social and behavioral sciences to community residents, providers, and advocates with knowledge of community priorities, assets, political processes, and key stakeholder groups.
Understanding how communities perceive and conceptualize health-related concerns and priorities may allow researchers to engage with communities in ways that are more productive and that lead to meaningful outcomes that improve public health practice and policy. By conducting exploratory studies across communities and within diverse populations, we think that the CTSA leadership could identify potential synergies between researchers from various departments and disciplines, as well as diverse community stakeholders. The construction of such teams is significant in that it may lead to the conceptualization of large-scale studies and interventions aimed at social determinants of health, which can be translated to spark change that is responsive to community priorities and sustainable.
We are grateful for the work of Ms. Christina Kilgo and Ms. Dana Williams who contributed to the implementation of the focus groups and data transcription and coding. This publication was supported by Grant Number UL1 RR025752 from the NCRR. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the NCRR.
Conflicts of Interest
The authors declare no conflict of interest.