Bringing Healthy Retail to Urban "Food Swamps": a Case Study of CBPR-Informed Policy and Neighborhood Change in San Francisco.

In urban "food swamps" like San Francisco's Tenderloin, the absence of full-service grocery stores and plethora of corner stores saturated with tobacco, alcohol, and processed food contribute to high rates of chronic disease. We explore the genesis of the Tenderloin Healthy Corner Store Coalition, its relationship with health department and academic partners, and its contributions to the passage and implementation of a healthy retail ordinance through community-based participatory research (CBPR), capacity building, and advocacy. The healthy retail ordinance incentivizes small stores to increase space for healthy foods and decrease tobacco and alcohol availability. Through Yin's multi-method case study analysis, we examined the partnership's processes and contributions to the ordinance within the framework of Kingdon's three-stage policymaking model. We also assessed preliminary outcomes of the ordinance, including a 35% increase in produce sales and moderate declines in tobacco sales in the first four stores participating in the Tenderloin, as well as a "ripple effect," through which non-participating stores also improved their retail environments. Despite challenges, CBPR partnerships led by a strong community coalition concerned with bedrock issues like food justice and neighborhood inequities in tobacco exposure may represent an important avenue for health equity-focused research and its translation into practice.

Awareness of Federal Regulatory Mechanisms Relevant to Community-Engaged Research: Survey of Health Disparities-Oriented NIH-Funded Investigators.

Few studies or investigators involved in community-engaged research or community-based participatory research have examined awareness and adoption of federal regulatory mechanisms. We conducted a survey of investigators affiliated with the 10 National Institutes of Health (NIH) Centers for Population Health and Health Disparities. A questionnaire designed to capture experience with the conduct and oversight of community-engaged research, and awareness of pertinent regulatory mechanisms, including Federalwide Assurances (FWAs), Individual Investigator Agreements (IIAs), and Institutional Review Board Authorization Agreements (IAAs), was completed by 101 respondents (68% response rate). Although most were aware of FWAs, only a minority of those surveyed reported knowledge of IAAs and IIAs and even fewer had used them in their research with community partners. Implications for future training and oversight are discussed.

Inclusive research: making a difference to policy and legislation.

BACKGROUND: While inclusive research has become an important stream in research with people with intellectual disabilities, there is a tension between the possibly empowering research process and the strength of the research itself to make social change happen. In this paper, we explore the contribution of two inclusive qualitative research studies in Australia and the Republic of Ireland to change in policy and legislation. MATERIALS AND METHODS: Both studies used qualitative methods including life stories and focus groups to explore the issue of sexuality and relationships. In both studies, people with intellectual disabilities were actively involved in undertaking the research. RESULTS: Both studies revealed that it was difficult for people with intellectual disabilities to express their sexuality openly or to form adult relationships. CONCLUSIONS: Both studies were used by people with intellectual disabilities and their supporters to promote change in which they had a heard voice. This paper is about how people with intellectual disabilities and their supporters can use research which they have done to change policies and laws that affect them. When people with intellectual disabilities are doing research it is called inclusive research.We write about two research studies which were about the sexual lives and relationships of people with intellectual disabilities. One research study was in Australia and one was in the Republic of Ireland.In the Australian study, Living Safer Sexual Lives, 25 people with intellectual disabilities told their life stories and talked about sexuality and relationships.In the Irish study people with intellectual disabilities told life stories and talked with other people with intellectual disabilities about their sexuality and relationships in groups. These are called focus groups.In this paper we explore 4 questions that arose from these studies. Question 1. What impact does doing research have on the people who are involved in it? People with intellectual disabilities in Australia were members of the group that guided the research. They were partners in its design, in deciding what questions should be asked about sexuality and relationships., and thinking about what was found out. They became involved in making films about the study. They learned a lot about research, sexuality and relationships and became members of a government committee to change policy about sexuality and people with disabilities. In Ireland people with intellectual disabilities involved in doing the research talked together about their lives. They then talked with 16 groups of people with intellectual disabilities about their relationships and sexuality. They learned about research and about sexuality and developed plays about their experiences. Question 2. To what extent can inclusive research change policy and practice? In Australia the research led to a change in government policy about sexuality and people with disabilities. The new policy clearly stated people with disabilities had rights to relationships and to a sexual life. It set out rights and responsibilities for people with intellectual disabilities and service providers about relationships and sexuality. It took a long time to get a change in policy and people with intellectual disabilities were part of the getting the change to happen. In Ireland there is a law which says that it is illegal to have some forms of sex with people with intellectual disabilities. From the research people with intellectual disabilities became involved in talking with government about changing this law so that it gives them more rights to a sexual life. The law has not changed yet but the voices of people with intellectual disabilities are now being heard. Question 3 When does research shift into being advocacy? How does this happen? People with intellectual disabilities in both studies became advocates to get change to happen. Partly this was because they had become more 'expert' about sexuality and relationships and the policy and law. They were angry at what they had found out in the research and wanted to get change to happen. Question 4 What added value does including people with intellectual disabilities as researchers give to the research? People with intellectual disabilities had knowledge and experience that made it possible for the research in both Australia and Ireland to happen. They were important in how the research was done and what was done with it after it was finished.

Ethical and legal implications of whole genome and whole exome sequencing in African populations.

BACKGROUND: Rapid advances in high throughput genomic technologies and next generation sequencing are making medical genomic research more readily accessible and affordable, including the sequencing of patient and control whole genomes and exomes in order to elucidate genetic factors underlying disease. Over the next five years, the Human Heredity and Health in Africa (H3Africa) Initiative, funded by the Wellcome Trust (United Kingdom) and the National Institutes of Health (United States of America), will contribute greatly towards sequencing of numerous African samples for biomedical research. DISCUSSION: Funding agencies and journals often require submission of genomic data from research participants to databases that allow open or controlled data access for all investigators. Access to such genotype-phenotype and pedigree data, however, needs careful control in order to prevent identification of individuals or families. This is particularly the case in Africa, where many researchers and their patients are inexperienced in the ethical issues accompanying whole genome and exome research; and where an historical unidirectional flow of samples and data out of Africa has created a sense of exploitation and distrust. In the current study, we analysed the implications of the anticipated surge of next generation sequencing data in Africa and the subsequent data sharing concepts on the protection of privacy of research subjects. We performed a retrospective analysis of the informed consent process for the continent and the rest-of-the-world and examined relevant legislation, both current and proposed. We investigated the following issues: (i) informed consent, including guidelines for performing culturally-sensitive next generation sequencing research in Africa and availability of suitable informed consent documents; (ii) data security and subject privacy whilst practicing data sharing; (iii) conveying the implications of such concepts to research participants in resource limited settings. SUMMARY: We conclude that, in order to meet the unique requirements of performing next generation sequencing-related research in African populations, novel approaches to the informed consent process are required. This will help to avoid infringement of privacy of individual subjects as well as to ensure that informed consent adheres to acceptable data protection levels with regard to use and transfer of such information.

Court-based participatory research: collaborating with the justice system to enhance sexual health services for vulnerable women in the United States.

BACKGROUND: Although jail screening programs have an important role in the diagnosis and treatment of sexually transmissible infections (STI) and HIV among incarcerated individuals, many arrestees are not screened before release. Justice-involved women are at particularly high risk for these conditions because of individual risk behaviour as well as other network-level risk factors. Court-based programs could provide a critical bridge between these women, STI risk counselling and health services. This formative study explored the features of a program that would encourage STI testing among court-involved women. Further, we describe how community-based participatory research principles were adapted for use in a court setting and the resulting justice-public health partnership. METHODS: Using semistructured interviews and focus group discussions, we explored issues related to health-seeking behaviours, perceived gaps in services for high-risk women and the components of a court-based screening program. RESULTS: Six focus groups were conducted with women with a history of commercial sex work and staff from the court, as well as local organisations providing HIV and social support services for high-risk women. Community-based participatory research (CBPR) principles facilitated development of relevant research questions and equitable processes, and assisted partners to consider individual and sociostructural sources of health disparities. DISCUSSION: Although not every principle was applicable in a court setting, the CBPR framework was helpful for building cohesion and support for the project. We provide a description of how CBPR principles were operationalised, describe the key lessons learned and discuss the implications for CBPR projects in a community court.

Bridging academic-legislative divides: models of policy-relevant health research and practice by the University of California.

PROBLEM: This paper argues that it is necessary to strengthen Asian American, Native Hawaiian, and Pacific Islander (AA and NHPI) community-based participatory research (CBPR) models that integrate a health policy agenda through dynamic legislative partnerships. PURPOSE: We utilize a case study approach and examine three health research partnership models that impact legislative design and action: The California Program on Access to Care (CPAC), the California Health Benefits Review Program (CHBRP), and the University of California Asian American and Pacific Islander Policy Multicampus Research Program (UC AAPI Policy MRP). KEY POINTS: In-depth examination reveals the difficulties of engaging in research that collaborates with multiple parties simultaneously and the specific benefits and challenges in each case. CONCLUSIONS: New directions are needed to deepen legislative engagement potential in CBPR and the translation of policy research that considers the health of all AA and NHPI communities.

Community consultation and public disclosure: preliminary results from a new model.

Emergency medicine research conducted under the exception from informed consent (EFIC) regulation enables critical scientific advancements. When EFIC is proposed, there is a requirement for broad community consultation and public disclosure (CC/PD) regarding the risks and benefits of the study. At the present time, no clear guidelines or standards exist for conducting and evaluating the CC/PD. This preliminary study tested the feasibility and acceptability of a new approach to CC/PD for a large-scale EFIC trial by engaging community members in designing and conducting the strategies. The authors enrolled key community members (called community advocates for research, or CARs) to use community-based participatory methods to design and implement CC/PD. By partnering with community members who represent target populations for the research study, this new approach has demonstrated a feasible CC/PD plan with greater community participation and less cost than previous studies. In a community survey, the percentage of community members reporting having heard about the EFIC trial more than doubled after employing the new approach. This article discusses initial implementation and results.

Developing community partner training: regulations and relationships.

While funders increasingly support research that partners with communities, community partners still must submit to a regulatory oversight structure that does not reflect their unique research ethics challenges and needs. In recognition of the importance of collaborative research endeavors, the authors engaged in a process of reconnaissance and negotiations with local community partners and research ethics boards (REBs) at the University of Michigan to begin to address the mismatch between regulatory demands and community-based research realities. This preliminary process yielded both changes in the REB oversight structure and training required of community partnered research. While the ultimate impact of these changes remains to be seen, the process itself yielded insights and materials of use to both our local REBs, and hopefully those at other institutions as well. This article will present those insights and provide links to those materials.

The research ethics committee is not the enemy: oversight of community-based participatory research.

Researchers conducting community-based participatory research (CBPR) often complain about research ethics committee (REC) oversight of their research. RECs may contribute to researchers' frustrations by seemingly focusing on form over substance and by failing to communicate effectively with researchers about their mission and their specific concerns. UCSF CBPR researchers presented their views of the UCSF REC's review of its tobacco use study in "It's Like Tuskegee in Reverse: A Case Study of Ethical Tensions in Institutional Review Board Review of Community-Based Participatory Research." This article builds on that case study by providing some perspectives from the REC side, identifying how the researchers and the REC came to be at odds, and seeking to bridge the gap between the CBPR and REC worlds. In particular, the article explores the different perspectives on who are human subjects under the federal regulations in CBPR research, who counts as the community, and the purpose of REC oversight. It offers concrete suggestions for improving the relationship between CBPR researchers and RECs.

The rise of the community-based participatory research initiative at the National Institute for Environmental Health Sciences: an historical analysis using the policy streams model.

BACKGROUND: Community-based participatory research (CBPR) is an approach to research that seeks equitable and collaborative involvement of community members and researchers in all aspects of the research process. It has moved slowly into the areas of health and public health research. In 1995, the National Institute for Environmental Health Sciences (NIEHS) launched the first research initiative at NIH specifying the use of the CBPR approach. OBJECTIVES: The purpose of this paper is to provide the historical record and to identify factors and events that led to the development of the policy creating the CBPR initiative at NIEHS. METHODS: The study used Kingdon's policy streams model as an analysis framework. The policy streams model explains that policies are developed when three "streams" (problem, policy and political) come together at a point called the policy window. Information collected from key informant interviews and document analyses were coded to the components of the policy streams model. RESULTS: The study documented factors and events in each of the three streams of the model. All these occurred about the same time to bring together the three streams, causing the opening of a policy window. This analysis demonstrates an importance of problem awareness and changes in leadership positions or ideology/mood to bring a policy option to the attention of policymakers, and the importance of a policy entrepreneur to advocate for a particular policy when the opportunity arises. CONCLUSIONS: Policy entrepreneurs should be alert for opportunities to take advantage of the open policy windows when they emerge, thereby achieving success in moving policy ideas forward.