Integrating Patient Priorities with Science by Community Engagement in the Kidney Precision Medicine Project.

The Kidney Precision Medicine Project (KPMP) is a multisite study designed to improve understanding of CKD attributed to diabetes or hypertension and AKI by performing protocol-driven kidney biopsies. Study participants and their kidney tissue samples undergo state-of-the-art deep phenotyping using advanced molecular, imaging, and data analytical methods. Few patients participate in research design or concepts for discovery science. A major goal of the KPMP is to include patients as equal partners to inform the research for clinically relevant benefit. The purpose of this report is to describe patient and community engagement and the value they bring to the KPMP. Patients with CKD and AKI and clinicians from the study sites are members of the Community Engagement Committee, with representation on other KPMP committees. They participate in KPMP deliberations to address scientific, clinical, logistic, analytic, ethical, and community engagement issues. The Community Engagement Committee guides KPMP research priorities from perspectives of patients and clinicians. Patients led development of essential study components, including the informed consent process, no-fault harm insurance coverage, the ethics statement, return of results plan, a "Patient Primer" for scientists and the public, and Community Advisory Boards. As members across other KPMP committees, the Community Engagement Committee assures that the science is developed and conducted in a manner relevant to study participants and the clinical community. Patients have guided the KPMP to produce research aligned with their priorities. The Community Engagement Committee partnership has set new benchmarks for patient leadership in precision medicine research.

Comprehensive sexuality education is 'not for us': Rethinking 'cultural relevance' through Young Tanzanians' identifications with/against intervention knowledge.

The need for comprehensive sexuality education (CSE) to be culturally relevant and inclusive is increasingly recognised as a fundamental aspect of supporting young people to live healthy sexual lives. Nevertheless questions remain about how to represent cultures and difference without subtly reinforcing inequalities. This paper makes a case for the need to explore this issue through analyses of how different gendered and demographic groups of young Tanzanian attendees of culturally relevant CSE, identify with (or against) intervention knowledge[s]. Grounded in dialogical social psychological theorising, we present a methodological approach for exploring how processes of belonging and Othering structure young people's negotiations of culturally relevant CSE amongst other knowledges. An adapted version of the 'story completion' method was used with university students and urban-poor young people (aged 18-34) to instigate dialogues about how a fictional protagonist might think, feel, and act in their relationship, looking to see if, and how, young people incorporated CSE knowledge. Twelve single-gendered focus-group discussions were held in September 2014 with 48 young people, and then findings from these were discussed further with 27 returning young people through three mixed-gendered workshops in August 2015. The analyses highlight how young Tanzanians explicitly Other CSE interventions, positioning their knowledge as 'not for us'. More implicitly, difference is also constructed around ideas about change and gendered development, along with trust and support in relationships. The devices used to Other shifted and differed across demographic groups, ranging from complete denials of intervention knowledge to viewing it as unrealistic, dangerous, or self-stigmatised for not being able to use it. We propose that these findings highlight the need to rethink how both 'culture' and 'relevance' are conceptualised in CSE, most specifically necessitating greater recognitions of poverty, transnationality, and the lasting legacies of colonialism and behaviour change interventions that communicated through fear and morality.

Assessment and Transplantation of Orphan Donor Livers: A Back-to-Base Approach to Normothermic Machine Perfusion.

Globally, a large proportion of donor livers are discarded due to concerns over inadequate organ quality. Normothermic machine perfusion (NMP) allows for hepatocellular and biliary viability assessment prior to transplantation and might therefore enable the safe use of these orphan donor livers. We describe here the first Australasian experience of NMP-preserved liver transplants using a 'back-to-base' approach, where NMP was commenced at the recipient hospital following initial static cold storage. In the preclinical phase, 10 human donor livers declined for transplantation (7 from donation after circulatory death [DCD] and 3 from donation after brain death [DBD]) were perfused using a custom-made NMP setup. Subsequently, 10 orphan donor livers (5 from DCD and 5 from DBD) underwent NMP and viability assessment on the OrganOx metra device (OrganOx Limited, Oxford, United Kingdom). Both hepatocellular and biliary viability criteria were used. The median donor risk index was 1.53 (1.16-1.71), and the median recipient Model for End-Stage Liver Disease score was 17 (11-21). In the preclinical phase, 'back-to-base' NMP was deemed suitable and feasible. In the clinical phase, each graft met predefined criteria for implantation during NMP and was subsequently transplanted. Five (50%) recipients developed early allograft dysfunction based on peak aspartate aminotransferase. To date, all grafts function satisfactorily, and none of the 5 recipients who received a DCD liver have developed cholangiopathy. The OrganOx metra using a back-to-base approach has enabled the safe use of 10 high-risk orphan donor livers with 100% 6-month patient and graft survival. NMP improved surgeon confidence to use orphan donor livers and has enabled a safe expansion of the donor pool.

Social capital, social movements and global public health: Fighting for health-enabling contexts in marginalised settings.

Research linking health and social capital is often cited in relation to global public health policies and programmes that mobilise local community participation in health promotion in marginalised settings. A long-standing criticism of this body of analysis and action is its inadequate attention to the power inequalities that drive poor health, often linked to macro-social forces beyond the reach of local community activism. Supplementing social capital research with attention to more ambitious and wide-ranging forms of health activism tackles this criticism. It puts the reproduction and transformation of health-relevant power inequalities at the heart of social capital research and community mobilisation strategies. We use the South African Treatment Action Campaign as a prototype for expanding understandings of social capital for health promotion. Existing social capital work currently focuses on facilitating community mobilisation to create co-operative bonding and bridging social capital (networks of solidarity within and between marginalised communities respectively), as well as linking social capital (networks uniting marginalised communities and more powerful champions). We call for an expanded focus that takes account of how these co-operative networks may serve as springboards for community involvement in adversarial social movements. In such cases, these networks of solidarity serve as launch pads for various forms of demand and protest where the marginalised and their allies confront power-holders in conflictual struggles over health-relevant social resources. We illustrate this expanded framework with two examples of collective action for mental health: the Movement for Global Mental Health and the UK Mental Health User and Survivor Movement. Both seek to use bonding, bridging and linking networks as the basis for movements to pressurise power-holders to increase access to appropriate psychiatric services, adequate welfare support and social respect and recognition for people living with mental distress.

Quantifying Direct DNA Damage in the Basal Layer of Skin Exposed to UV Radiation from Sunbeds.

Nonmelanoma and melanoma skin cancers are attributable to DNA damage caused by ultraviolet (UV) radiation exposure. One DNA photoproduct, the cyclobutane pyrimidine dimer (CPD), is believed to lead to DNA mutations caused by UV radiation. Using radiative transfer simulations, we compare the number of CPDs directly induced by UV irradiation from artificial and natural UV sources (a standard sunbed and the midday summer Mediterranean sun) for skin types I and II on the Fitzpatrick scale. We use Monte Carlo radiative transfer (MCRT) modeling to track the progression of UV photons through a multilayered three dimensional (3D) grid that simulates the upper layers of the skin. By recording the energy deposited in the DNA-containing cells of the basal layer, the number of CPDs formed can be quantified. The aim of this work was to compare the number of CPDs formed in the basal layer of the skin and by implication the risk of developing cancer, as a consequence of irradiation by artificial and natural sources. Our simulations show that the number of CPDs formed per second during sunbed irradiation is almost three times that formed during solar irradiation.

The implications of community responses to intimate partner violence in Rwanda.

Intimate partner violence (IPV) has significant impacts on mental health. Community-focused interventions have shown promising results for addressing IPV in low-income countries, however, little is known about the implications of these interventions for women's mental wellbeing. This paper analyses data from a community-focused policy intervention in Rwanda collected in 2013-14, including focus group discussions and in-depth interviews with community members (n = 59). Our findings point to three ways in which these community members responded to IPV: (1) reconciling couples experiencing violence, (2) engaging community support through raising cases of IPV during community discussions, (3) navigating resources for women experiencing IPV, including police, social services and legal support. These community responses support women experiencing violence by helping them access available resources and by engaging in community discussions. However, assistance is largely only offered to married women and responses tend to focus exclusively on physical rather than psychological or emotional forms of violence. Drawing on Campbell and Burgess's (2012) framework for 'community mental health competence', we interrogate the potential implications of these responses for the mental wellbeing of women affected by violence. We conclude by drawing attention to the gendered nature of community responses to IPV and the potential impacts this may have for the mental health of women experiencing IPV.

A reconfiguration of the sex trade: How social and structural changes in eastern Zimbabwe left women involved in sex work and transactional sex more vulnerable.

Understanding the dynamic nature of sex work is important for explaining the course of HIV epidemics. While health and development interventions targeting sex workers may alter the dynamics of the sex trade in particular localities, little has been done to explore how large-scale social and structural changes, such as economic recessions-outside of the bounds of organizational intervention-may reconfigure social norms and attitudes with regards to sex work. Zimbabwe's economic collapse in 2009, following a period (2000-2009) of economic decline, within a declining HIV epidemic, provides a unique opportunity to study community perceptions of the impact of socio-economic upheaval on the sex trade. We conducted focus group discussions with 122 community members in rural eastern Zimbabwe in January-February 2009. Groups were homogeneous by gender and occupation and included female sex workers, married women, and men who frequented bars. The focus groups elicited discussion around changes (comparing contemporaneous circumstances in 2009 to their memories of circumstances in 2000) in the demand for, and supply of, paid sex, and how sex workers and clients adapted to these changes, and with what implications for their health and well-being. Transcripts were thematically analyzed. The analysis revealed how changing economic conditions, combined with an increased awareness and fear of HIV-changing norms and local attitudes toward sex work-had altered the demand for commercial sex. In response, sex work dispersed from the bars into the wider community, requiring female sex workers to employ different tactics to attract clients. Hyperinflation meant that sex workers had to accept new forms of payment, including sex-on-credit and commodities. Further impacting the demand for commercial sex work was a poverty-driven increase in transactional sex. The economic upheaval in Zimbabwe effectively reorganized the market for sex by reducing previously dominant forms of commercial sex, while simultaneously providing new opportunities for women to exchange sex in less formal and more risky transactions. Efforts to measure and respond to the contribution of sex work to HIV transmission need to guard against unduly static definitions and consider the changing socioeconomic context and how this can cause shifts in behavior.

Conceptualising the agency of highly marginalised women: Intimate partner violence in extreme settings.

How is the agency of women best conceptualised in highly coercive settings? We explore this in the context of international efforts to reduce intimate partner violence (IPV) against women in heterosexual relationships. Articles critique the tendency to think of women's agency and programme endpoints in terms of individual actions, such as reporting violent men or leaving violent relationships, whilst neglecting the interlocking social, economic and cultural contexts that make such actions unlikely or impossible. Three themes cut across the articles. (1) Unhelpful understandings of gender and power implicit in commonly used 'men-women' and 'victim-agent' binaries obscure multi-faceted and hidden forms of women's agency, and the complexity of agency-violence intersections. (2) This neglect of complexity results in a poor fit between policy and interventions to reduce IPV, and women's lives. (3) Such neglect also obscures the multiplicities of women's agency, including the competing challenges they juggle alongside IPV, differing levels of response, and the temporality of agency. We outline a notion of 'distributed agency' as a multi-level, incremental and non-linear process distributed across time, space and social networks, and across a continuum of action ranging from survival to resistance. This understanding of agency implies a different approach to those currently underpinning policies and interventions.

Creating social policy to support women's agency in coercive settings: A case study from Uganda.

Many emphasise the need for policies that support women's agency in highly coercive settings, and the importance of involving target women in public deliberation to inform policy design. The Ugandan Marriage and Divorce Bill seeks to strengthen women's agency in marriage, but has faced many obstacles, including objections from many women themselves in public consultations. We explore key stakeholders' accounts of the difficulties facing the Bill's progress to date, through focus groups with 24 rural and urban men and women, interviews with 14 gender champions in government, non-governmental organisations and legal sectors, and 25 relevant media and radio reports. Thematic analysis revealed an array of representations of the way the Bill's progress was shaped by the public consultation process, the nature of the Ugandan public sphere, the understanding and manipulation of concepts such as 'culture' and 'custom' in public discourse, the impact of economic inequalities on women's understandings of their gendered interests and low women's trust in the law and the political process. We discuss the complexities of involving highly marginalised women in public debates about gender issues and highlight possible implications for conceptualising agency, gender and social change as tools for gender policy and activism in extreme inequality.

Can local communities 'sustain' HIV/AIDS programmes? A South African example.

Globally, there is a renewed interest in building the local sustainability of HIV/AIDS programmes to ensure that once funders withdraw, local communities can sustain programmes. While the 'local sustainability assumption' is widespread, little research has assessed this. In this article, we assess the sustainability of the Entabeni Project, a community-based intervention that sought to build women's local leadership and capacity to respond to HIV/AIDS through a group of volunteer carers, 3 years after external support was withdrawn. Overall, the sustainability of the Entabeni Project was limited. The wider social and political context undermined volunteer carers' sense that they could affect change, with little external support for them from government and NGOs, who struggled to engage with local community organizations. At the community level, some church leaders and community members recognized the important role of health volunteers, many continued to devalue the work of the carers, especially once there was no external organization to support and validate their work. Within the health volunteer group, despite extensive efforts to change dynamics, it remained dominated by a local male leader who denied others active participation while lacking the skills to meaningfully lead the project. Our case study suggests that the local-sustainability assumption is wishful thinking. Small-scale local projects are unlikely to be able to challenge the broader social and political dynamics hindering their sustainability without meaningful external support.

Community resistance to a peer education programme in Zimbabwe.

BACKGROUND: This paper presents community perceptions of a state-of-the-art peer education programme in Manicaland, Zimbabwe. While the intervention succeeded in increasing HIV knowledge among men and condom acceptability among women, and reduced HIV incidence and rates of unprotected sex among men who attended education events, it did not succeed in reducing population-level HIV incidence. To understand the possible reasons for this disappointing result, we conducted a qualitative study of local perspectives of the intervention. METHODS: Eight focus group discussions and 11 interviews with 81 community members and local project staff were conducted. Transcripts were interrogated and analysed thematically. RESULTS: We identified three factors that may have contributed to the programme's disappointing outcomes: (1) difficulties of implementing all elements of the programme, particularly the proposed income generation component in the wider context of economic strain; (2) a moralistic approach to commercial sex work by programme staff; and (3) limitations in the programme's ability to engage with social realities facing community members. CONCLUSIONS: We conclude that externally-imposed programmes that present new information without adequately engaging with local realities and constraints on action can be met by resistance to change.

Developing and implementing global gender policy to reduce HIV and AIDS in low- and middle-income countries: policy makers' perspectives.

Gender inequalities have been recognised as central to the HIV epidemic for many years. In response, a range of gender policies have been developed in attempts to mitigate the impact and transform gender relations. However, the effects of these policies have been less than successful. In March 2010 the Joint United Nations Programme on HIV/AIDS (UNAIDS) launched the Agenda for accelerated country level action on women, girls, gender equality and HIV (the Agenda), an operational plan on how to integrate women, girls and gender equality into the HIV response. This paper explores the perspectives of those involved in developing and implementing the Agenda to understand its strengths and limitations. In-depth one-on-one interviews were conducted with 16 individuals involved in the development and implementation of the Agenda. The data were analysed using thematic network analysis. Facilitators of the Agenda centred on the Agenda's ability to create political space for women and girls within the global HIV/AIDS response and the collaborative process of developing the Agenda. Barriers to the implementation and development of the Agenda include the limited financial and non-financial resources, the top-down nature of the Agenda's development and implementation and a lack of political will from within UNAIDS to implement it. We suggest that the Agenda achieved many goals, but its effect was constrained by a wide range of factors.

Reimagining community health psychology: maps, journeys and new terrains.

This special issue celebrates and maps out the 'coming of age' of community health psychology, demonstrating its confident and productive expansion beyond its roots in the theory and practice of small-scale collective action in local settings. Articles demonstrate the field's engagement with the growing complexity of local and global inequalities, contemporary forms of collective social protest and developments in critical social science. These open up novel problem spaces for the application and extension of its theories and methods, deepening our understandings of power, identity, community, knowledge and social change - in the context of evolving understandings of the spatial, embodied, relational, collaborative and historical dimensions of health.

Community mobilisation in the 21st century: updating our theory of social change?

The article explores the Freirian theory of social change underpinning health-related community mobilisation in poor and marginalised communities. Highlighting potential shortcomings of its essentialist understandings of power and identity, and linear notions of change, it examines how lessons from the 'new left', and burgeoning global protest movements, can rejuvenate the field given the growing complexity of 21st-century social inequalities. It suggests the need for a pastiche of approaches to accommodate health struggles in different times and places. However, while needing some updating, Freire's profound and actionable understandings of the symbolic and material dimensions of social inequalities remain a powerful starting point for activism.

Improving maternal health through social accountability: a case study from Orissa, India.

As maternal health specialists accelerate efforts towards Millennium Development Goal Five, attention is focusing on how to best improve service accountability to target communities as a strategy for more effective policy implementation. We present a case study of efforts to improve accountability in Orissa, India, focusing on the role of local women, intermediary groups, health providers and elected politicians. We highlight three drivers of success: (1) the generation of demand for rights and better services, (2) the leverage of intermediaries to legitimise the demands of poor and marginalised women and (3) the sensitisation of leaders and health providers to women's needs. We use the concepts of critical consciousness, social capital and 'receptive social spaces' to outline a social-psychological account of the pathways between accountability and service effectiveness.

The role of communities in advancing the goals of the Movement for Global Mental Health.

This special section of Transcultural Psychiatry explores the local-global spaces of engagement being opened up by the Movement for Global Mental Health, with particular emphasis on the need for expanded engagement with local communities. Currently the Movement places its main emphasis on scaling up mental health services and advocating for the rights of the mentally ill, framed within universalised western understandings of health, healing and personhood. The papers in this section emphasise the need for greater attention to the impacts of context, culture and local survival strategies on peoples' responses to adversity and illness, greater acknowledgement of the agency and resilience of vulnerable communities and increased attention to the way in which power inequalities and social injustices frame peoples' opportunities for mental health. In this Introduction, we highlight ways in which greater community involvement opens up possibilities for tackling each of these challenges. Drawing on community health psychology, we outline our conceptualisation of "community mental health competence" defined as the ability of community members to work collectively to facilitate more effective prevention, care, treatment and advocacy. We highlight the roles of multi-level dialogue, critical thinking and partnerships in facilitating both the "voice" of vulnerable communities as well as "receptive social environments" where powerful groups are willing to recognise communities' needs and assist them in working for improved well-being. Respectful local-global alliances have a key role to play in this process. The integration of local community struggles for mental health into an energetic global activist Movement opens up exciting possibilities for translating the Movement's calls for improved global mental health from rhetoric to reality.

From brothel to boardroom: prospects for community leadership of HIV interventions in the context of global funding practices.

The empowerment of marginalised communities to lead local responses to HIV/AIDS is a key strategy of funding agencies' globalised HIV/AIDS policies, given evidence that disempowerment is a root source of vulnerability to HIV. We report on two multi-level ethnographies at the interface between HIV prevention projects for sex workers in India and their funding environment, examining the extent to which the funding environment itself promotes or undermines sex worker empowerment. We show how the 'new managerialism' characteristic of the funding system undermines sex worker leadership of HIV interventions. By requiring local projects to conform to global management standards, funding agencies risk undermining the very localism and empowerment that their intervention policies espouse.

How can community health programmes build enabling environments for transformative communication? Experiences from India and South Africa.

Much research has examined how to empower the poor to articulate demands for health-enabling living conditions. Less is known about creating receptive social environments where the powerful heed the voices of the poor. We explore the potential for 'transformative communication' between the poor and the powerful, through comparing two well-documented case studies of HIV/AIDS management. The Entabeni Project in South Africa sought to empower impoverished women to deliver home-based nursing to people with AIDS. It successfully provided short-term welfare, but did not achieve local leadership or sustainability. The Sonagachi Project in India, an HIV-prevention programme targeting female sex workers, became locally led and sustainable. We highlight the strategies through which Sonagachi, but not Entabeni, altered the material, symbolic and relational contexts of participants' lives, enabling transformative communication and opportunities for sexual health-enabling social change.