Complexities of holistic community-based participatory research for a low income, multi-ethnic population exposed to multiple built-environment stressors in Worcester, Massachusetts

Low income, multi-ethnic communities in Main South/Piedmont neighborhoods of Worcester, Massachusetts are exposed to cumulative, chronic built-environment stressors, and have limited capacity to respond, magnifying their vulnerability to adverse health outcomes. “Neighborhood STRENGTH”, our community-based participatory research (CBPR) project, comprised four partners: a youth center; an environmental non-profit; a community-based health center; and a university. Unlike most CBPR projects that are single topic-focused, our ‘holistic’, systems-based project targeted five priorities. The three research-focused/action-oriented components were: (1) participatory monitoring of indoor and outdoor pollution; (2) learning about health needs and concerns of residents through community-based listening sessions; (3) engaging in collaborative survey work, including a household vulnerability survey and an asthma prevalence survey for schoolchildren. The two action-focused/research-informed components were: (4) tackling persistent street trash and illegal dumping strategically; and (5) educating and empowering youth to promote environmental justice. We used a coupled CBPR-capacity building approach to design, vulnerability theory to frame, and mixed methods: quantitative environmental testing and qualitative surveys. Process and outcomes yielded important lessons: vulnerability theory helps frame issues holistically; having several topic-based projects yielded useful information, but was hard to manage and articulate to the public; access to, and engagement with, the target population was very difficult and would have benefited greatly from having representative residents who were paid at the partners’ table. Engagement with residents and conflict burden varied highly across components. Notwithstanding, we built enabling capacity, strengthened our understanding of vulnerability, and are able to share valuable experiential knowledge.     

Community-based participatory research: a vehicle to promote public engagement for environmental health in China

Background

In the past 25 years, China has experienced remarkable economic growth and rapid agricultural-to-industrial and rural-to-urban transitions. As a consequence, China now faces many daunting environmental challenges that are significantly affecting human health and quality of life, including indoor and outdoor air pollution, water pollution, deforestation, loss of agricultural land, and sustainability. Chinese government leaders have recently emphasized the need for better environmental protection practices along with interventions involving strong public participation.

Objectives

Community-based participatory research (CBPR) is a collaborative approach to research that involves community members, organizational representatives, and researchers as equal participants in all phases of the research process. Over the past 15 years, CBPR has gained recognition and acceptance and is now valued as a means to effect change and provide scientific knowledge relevant to human health and the environment. In this article we highlight the success of CBPR in the United States and suggest that it could be a useful model for addressing environmental health problems in the People’s Republic of China.

Discussion

CBPR can reduce the tension between science and society by promoting genuine communication, by enabling scientists and administrators to listen and respond to the public, by allowing communities to help shape the research agenda, and by increasing accountability of researchers and governments to the public.

Conclusions

CBPR can potentially help improve environmental health in China, but it is likely to take a different form than it has in the West because the government will be leading the way.     

Development of an audio-computer assisted self-interview to investigate violence and health in the lives of adults with developmental disabilities

BackgroundAudio computer-assisted self-interviews (ACASIs) have safely and effectively obtained sensitive research data from the general public and have been recommended for use with people with disabilities. However, few studies have used ACASIs with people with disabilities and ACASIs have not been used to investigate the relationship between disability, interpersonal violence (IPV), and physical and psychological health among people with developmental disabilities (PWDD).ObjectiveWe developed an accessible ACASI specifically designed to allow PWDD to answer questions independently, while privately and securely collecting anonymous data related to their disability, IPV experiences, and physical and psychological health.MethodsWe used a safety protocol to apply community based participatory research (CBPR) principles and an iterative process to create, test, and administer a cross-sectional ACASI survey to 350 adults with developmental disabilities in urban and rural locales.ResultsMost participants completed the ACASI independently and reported that its accessibility features allowed them to do so. Most also agreed that the ACASI was easy to use, its questions were easy to understand, and that they would prefer using an ACASI to answer IPV and health-related questions rather than in a face-to-face interview. The majority agreed that health and safety were critical issues to address.ConclusionsACASI technology has the potential to maximize the independent and private participation of PWDD in research on sensitive topics. We recommend further exploration into accessibility options for ACASI technology, including hardware and Internet applications.     

Workshop summary: connecting social and environmental factors to measure and track environmental health disparities

On May 24-25, 2005 in Ann Arbor, Michigan, the US Environmental Protection Agency, the National Institute of Environmental Health Sciences, and the University of Michigan sponsored a technical workshop on the topic of connecting social and environmental factors to measure and track environmental health disparities. The workshop was designed to develop a transdisciplinary scientific foundation for exploring the conceptual issues, data needs, and policy applications associated with social and environmental factors used to measure and track racial, ethnic, and class disparities in environmental health. Papers, presentations, and discussions focused on the use of multilevel analysis to study environmental health disparities, the development of an organizing framework for evaluating health disparities, the development of indicators, and the generation of community-based participatory approaches for indicator development and use. Group exercises were conducted to identify preliminary lists of priority health outcomes and potential indicators and to discuss policy implications and next steps. Three critical issues that stem from the workshop were: (a) stronger funding support is needed for community-based participatory research in environmental health disparities, (b) race/ethnicity and socioeconomic position need to be included in environmental health surveillance and research, and (c) models to elucidate the interrelations between social, physical, and built environments should continue to be developed and empirically tested.     

Confluent paths: Research and community participation to protect the right to health among transgender women in Peru

ABSTRACT

The recognition of transgender women (TGW) as the most vulnerable population to HIV/AIDS in Peru and their inclusion as a specific key affected population in health research was the outcome of an extended process that culminated when TGW community organisations succeeded in articulating themselves as a population separate from men who have sex with men (MSM) and, in alliance with some academic research groups, documented their HIV prevalence and vulnerability factors. Prior to that process, TGW remained subsumed under the epidemiological category of men who have sex with men (MSM), invisible in the context of public health policies. Based on a growing body of academic research evidence, coupled with the increasing number and capacities of TGW representatives in technical and policy-related gatherings, a consensus emerged for the establishment of TGW health statistics separate from MSM by 2010. During the past decade, social and health research has contributed conclusive evidence on the living conditions of TGW and the structural barriers they face, beyond the focus of HIV/AIDS research. Despite such progress, pervasive barriers in public policies continue to hinder the use of existing research evidence and community experience in the development of sensitive HIV prevention and care strategies as part of a comprehensive health model for TGW in Peru.     

Patient-centred interprofessional collaboration in primary care: challenges for clinical,educational and health services research. An EGPRN keynote paper

The theme ‘patient-centred interprofessional collaboration’ of the EGPRN conference in October 2012, captures in just three words important challenges for European primary care and its research agenda. Challenges for future research are formulated, in three domains: clinical, educational and health services research. Transferability of research, based upon advanced computational infrastructure, will facilitate a rapid learning health care system. In educational research, this includes the use of observational and reflexivity methods. Outcomes should be defined in terms of improvement of functional status and social participation rather than in terms of disease-specific outcomes. Partnership with all stakeholders, patients, GPs and their health care colleagues and students, can help in reducing avoidable waste in the production and reporting of research evidence.     

Benefits of cooperation among large-scale cohort studies and human biomonitoring projects in environmental health research: An exercise in blood lead analysis of the Environment and Child Health International Birth Cohort Group

A number of prospective cohort studies are ongoing worldwide to investigate the impact of foetal and neonatal exposures to chemical substances on child health. To assess multiple exposure (mixture) effects and low prevalence health outcomes it is useful to pool data from several studies and conduct mega-data-analysis. To discuss a path towards data harmonization, representatives from several large-scale birth cohort studies and a biomonitoring programme formed a collaborative group, the Environment and Child Health International Birth Cohort Group (ECHIBCG). In this study, an intra-laboratory trial was performed to harmonize existing blood lead measurements within the groups' studies. Then, decentralized analyses were conducted in individual countries' laboratories to evaluate blood lead levels (BLL) in each study. The measurements of pooled BLL samples in French, German and three Japanese laboratories resulted in an overall mean blood lead concentration of 8.66 μg l^?1 (95% confidence interval: 8.59–8.72 μg l^?1) with 3.0% relative standard deviation. Except for China's samples, BLL from each study were comparable with mean concentrations below or close to 10 μg l^?1. The decentralized multivariate analyses revealed that all models had coefficients of determination below 0.1. Determinants of BLL were current smoking, age >35 years and overweight or obese status. The three variables were associated with an increase in BLL in each of the five studies, most strongly in France by almost 80% and the weakest effect being in Norway with only 15%; for Japan, with the far largest sample (~18,000), the difference was 36%. This study successfully demonstrated that the laboratory analytical methods were sufficiently similar to allow direct comparison of data and showed that it is possible to harmonize the epidemiological data for joint analysis. This exercise showed the challenges in decentralized data analyses and reinforces the need for data harmonization among studies.