What should community organisations consider when deciding to partner with researchers? A critical reflection on the Zilla Budakattu Girijana Abhivrudhhi Sangha experience in Karnataka, India.

BACKGROUND: Community organisations and community members are increasingly being involved in health research projects worldwide as part of the engagement movement. Achieving deeper forms of community engagement like partnership demands that decision-making power be shared with community partners. However, how can community partners assess if meaningful engagement and shared decision-making will be possible when approached by prospective research partners? In this paper, we explore how community organisations decide to join health research projects when approached by health researchers. METHODS: Case study research was undertaken on a health systems research project in Karnataka, India called Participation for Local Action, which was carried out by local researchers in partnership with the Zilla Budakattu Girijana Abhivrudhhi Sangha, a community development organisation. In-depth interviews were conducted with the researchers, Sangha leaders and field investigators from their community. RESULTS: Thematic analysis identified two main themes - 'context' and 'deciding to engage'. The Sangha's experience offers lessons to other community organisations that can help them when deciding to engage with researchers in terms of what features to look for in research partners and in proposed research projects, what requests to make of prospective research partners, and what sorts of outcomes or partnership agreements to accept. These lessons may be especially applicable in contexts where relationships of trust already exist between partners and where they have the skills to lead data collection and analysis. CONCLUSIONS: We hope that this guidance will help empower community organisations to select good research partners and promote more equitable partnerships between community partners and academic researchers.

A health equity research agenda for India: results of a consultative exercise.

BACKGROUND: This paper describes the process and outcome of a consultative exercise undertaken to develop a medium-term agenda for the next decade, and to identify a short list of immediate priorities for health equity research in India. This exercise was undertaken over 2014-2017 as part of 'Closing the Gap: Health Equity Research Initiative in India', implemented by the Achutha Menon Centre for Health Science Studies, at the Sree Chitra Tirunal Institute of Medical Sciences and Technology, Trivandrum, in south India. METHODS: We adopted a five-step process for the agenda- and priority-setting exercise. The first step, which lasted for approximately 1 year, consisted of a synthesis of evidence on health inequities in India produced during 2000-2014 and identification of gaps. In the second step, we shared the evidence gaps identified and engaged with diverse stakeholders to develop the research agenda through face-to-face and online consultations. In step three, we consolidated the research agenda and identified continuing gaps. Key informant consultations by phone or email with experts in the areas where gaps were identified constituted the fourth step. In the fifth and final step, we organised an expert group consultation to review the agenda and identify immediate research priorities through a consensus process. Overall, approximately 220 persons participated in the entire process, and consisted of persons from diverse disciplines and sectors. RESULTS: The research agenda and immediate priorities that emerged may be categorised into four themes, namely (1) descriptive research on the extent, nature and time trends in health inequities; (2) explanatory research on the pathways through which health inequities are created, and the political or policy environment that facilitates the process; (3) explanatory research that examines how health systems facilitate or mitigate inequities in healthcare; and (4) intervention research on initiatives that helped to mitigate health inequities, and examines the contributing factors. CONCLUSION: The strength of this research agenda is that it was developed through a broad-based consultation with stakeholders representing diverse disciplines, sectors and constituencies. The use of this agenda will help generate evidence that will facilitate India moving closer to the Sustainable Development Goal of leaving no one behind.

Promoting universal financial protection: evidence from the Rashtriya Swasthya Bima Yojana (RSBY) in Gujarat, India.

BACKGROUND: India's health expenditure is met mostly by households through out-of-pocket (OOP) payments at the time of illness. To protect poor families, the Indian government launched a national health insurance scheme (RSBY). Those below the national poverty line (BPL) are eligible to join the RSBY. The premium is heavily subsidised by the government. The enrolled members receive a card and can avail of free hospitalisation care up to a maximum of US$ 600 per family per year. The hospitals are reimbursed by the insurance companies. The objective of our study was to analyse the extent to which RSBY contributes to universal health coverage by protecting families from making OOP payments. METHODS: A two-stage stratified sampling technique was used to identify eligible BPL families in Patan district of Gujarat, India. Initially, all 517 villages were listed and 78 were selected randomly. From each of these villages, 40 BPL households were randomly selected and a structured questionnaire was administered. Interviews and discussions were also conducted among key stakeholders. RESULTS: Our sample contained 2,920 households who had enrolled in the RSBY; most were from the poorer sections of society. The average hospital admission rate for the period 2010-2011 was 40/1,000 enrolled. Women, elderly and those belonging to the lowest caste had a higher hospitalisation rate. Forty four per cent of patients who had enrolled in RSBY and had used the RSBY card still faced OOP payments at the time of hospitalisation. The median OOP payment for the above patients was US$ 80 (interquartile range, $16-$200) and was similar in both government and private hospitals. Patients incurred OOP payments mainly because they were asked to purchase medicines and diagnostics, though the same were included in the benefit package. CONCLUSIONS: While the RSBY has managed to include the poor under its umbrella, it has provided only partial financial coverage. Nearly 60% of insured and admitted patients made OOP payments. We plea for better monitoring of the scheme and speculate that it is possible to enhance effective financial coverage of the RSBY if the nodal agency at state level would strengthen its stewardship and oversight functions.

The role of social vulnerability in improving interventions for neglected zoonotic diseases: The example of Kyasanur Forest Disease in India.

Forest-based communities manage many risks to health and socio-economic welfare including the increasing threat of emerging zoonoses that are expected to disproportionately affect poor and marginalised groups, and further impair their precarious livelihoods, particularly in Low-and-Middle Income (LMIC) settings. Yet, there is a relative dearth of empirical research on the vulnerability and adaptation pathways of poor and marginalised groups facing emerging zoonoses. Drawing on a survey of 229 households and a series of key-informant interviews in the Western Ghats, we examine the factors affecting vulnerability of smallholder and tribal households to Kyasanur Forest Disease (KFD), an often-fatal tick-borne viral haemorrhagic fever endemic in south India. Specifically, we investigate how different socio-demographic and institutional factors interact to shape KFD vulnerability and the strategies employed by households to adapt to disease consequences. Although surveyed households generally perceived KFD as an important health issue in the study region, there was variability in concern about contracting the disease. Overall results showed that poor access to land (AOR = 0.373, 95% CI: 0.152-0.916), being at or below the poverty line (AOR = 0.253, 95% CI: 0.094-0.685) and being headed by an older person (AOR = 1.038, 95% CI: 1.006-1.071) were all significant determinants of perceived KFD vulnerability. Furthermore, KFD vulnerability is also modulated by important extra-household factors including proximity to private hospitals (AOR = 3.281, 95% CI: 1.220-8.820), main roads (AOR = 2.144, 95% CI: 1.215-3.783) and study location (AOR = 0.226, 95% CI: 0.690-0.743). Our findings highlight how homogenous characterisation of smallholder and tribal communities and the 'techno-oriented' approach of existing interventions may further marginalise the most vulnerable and exacerbate existing inequalities. These findings are important for designing context-specific and appropriate health interventions (including the prioritisation of awareness raising, knowledge networks, livelihood diversification) that enhances the resilience of at-risk social groups within the KFD context. More broadly, our findings highlight how a focus on social vulnerability can help national and international health planners improve health interventions and prioritise among diseases with respect to neglected endemic zoonoses.

Response to correspondence article on the research protocol titled Towards Health Equity and Transformative Action on tribal health (THETA) studyto describe, explain and act on tribal health inequities in India: A health systems research study protocol.

In this correspondence, we, co-authors and collaborators involved in the Towards Health Equity and Transformative Action on tribal health (THETA) study respond to a recent article published in Wellcome Open Research titled  Correspondence article on the research protocol titled 'Towards Health Equity and Transformative Action on tribal health (THETA) study to describe, explain and act on tribal health inequities in India: A health systems research study protocol' published in Wellcome Open Research in December 2019 In the first part, we provide overall clarifications on the THETA study and in the second part respond to specific comments by the authors of the aforementioned correspondence.

Overcoming structural barriers to sharing power with communities in global health research priority-setting: Lessons from the Participation for Local Action project in Karnataka, India.

Community engagement is gaining prominence in global health research. But communities rarely have a say in the agendas or conduct of the very health research projects that aim to help them. This paper provides new evidence on how to share power in priority-setting in ways that seek to overcome structural constraints created by the funding environment. The five strategies were identified through case study research on the Participation for Local Action project in Karnataka, India. That project was carried out by researchers in partnership with the Zilla Budakattu Girijana Abhivrudhhi Sangha, an indigenous community development organisation representing the Solega people. The paper describes each identified strategy for sharing power in priority-setting, followed by a report of the pitfalls and challenges that arose when implementing it. Thus, the study also demonstrates that even where actions and strategies are used to address power imbalances, pitfalls will arise that need to be navigated. Given those challenges, considerations to reflect upon before employing the identified strategies are suggested. Ultimately, the paper aims to communicate strategies for sharing power during and after priority-setting and lessons on how to implement them effectively that can be used by global health researchers in the current funding environment.

How is inclusiveness in health systems research priority-setting affected when community organizations lead the process?

Community engagement is gaining prominence in health research. But communities rarely have a say in the agendas or conduct of the very health research projects that aim to help them. One way thought to achieve greater inclusion for communities throughout health research projects, including during priority-setting, is for researchers to partner with community organizations (COs). This paper provides initial empirical evidence as to the complexities such partnerships bring to priority-setting practice. Case study research was undertaken on a three-stage CO-led priority-setting process for health systems research. The CO was the Zilla Budakattu Girijana Abhivrudhhi Sangha, a district-level community development organization representing the Soliga people in Karnataka, India. Data on the priority-setting process were collected in 2018 and 2019 through in-depth interviews with researchers, Sangha leaders and field investigators from the Soliga community who collected data as part of the priority-setting process. Direct observation and document collection were also performed, and data from all three sources were thematically analysed. The case study demonstrates that, when COs lead health research priority-setting, their strengths and weaknesses in terms of representation and voice will affect inclusion at each stage of the priority-setting process. CO strengths can deepen inclusion by the CO and its wider community. CO weaknesses can create limitations for inclusion if not mitigated, exacerbating or reinforcing the very hierarchies that impede the achievement of improved health outcomes, e.g. exclusion of women in decision-making processes related to their health. Based on these findings, recommendations are made to support the achievement of inclusive CO-led health research priority-setting processes.

Co-production of knowledge as part of a OneHealth approach to better control zoonotic diseases.

There is increased global and national attention on the need for effective strategies to control zoonotic diseases. Quick, effective action is, however, hampered by poor evidence-bases and limited coordination between stakeholders from relevant sectors such as public and animal health, wildlife and forestry sectors at different scales, who may not usually work together. The OneHealth approach recognises the value of cross-sectoral evaluation of human, animal and environmental health questions in an integrated, holistic and transdisciplinary manner to reduce disease impacts and/or mitigate risks. Co-production of knowledge is also widely advocated to improve the quality and acceptability of decision-making across sectors and may be particularly important when it comes to zoonoses. This paper brings together OneHealth and knowledge co-production and reflects on lessons learned for future OneHealth co-production processes by describing a process implemented to understand spill-over and identify disease control and mitigation strategies for a zoonotic disease in Southern India (Kyasanur Forest Disease). The co-production process aimed to develop a joint decision-support tool with stakeholders, and we complemented our approach with a simple retrospective theory of change on researcher expectations of the system-level outcomes of the co-production process. Our results highlight that while co-production in OneHealth is a difficult and resource intensive process, requiring regular iterative adjustments and flexibility, the beneficial outcomes justify its adoption. A key future aim should be to improve and evaluate the degree of inter-sectoral collaboration required to achieve the aims of OneHealth. We conclude by providing guidelines based on our experience to help funders and decision-makers support future co-production processes.

Sickle cell disease in India: a scoping review from a health systems perspective to identify an agenda for research and action.

INTRODUCTION: Sickle cell disease (SCD) disproportionately impacts Adivasi (tribal) communities in India. Current research has focused on epidemiological and biomedical aspects but there has been scarce research on social determinants and health systems aspects. Given its fragmented distribution, resources and programmes have emerged in west and central India. This scoping review seeks to identify geographical and evidence gaps for action on SCD from a health systems lens. METHODS: We followed a scoping review protocol, using Google Scholar and PubMed for published literature. Keywords used included sickle cell anaemia/disease, health systems, tribal and India. We used Google search for grey literature. We compiled a list of 55 records (of which 35 were retained), with about half pertaining directly to India and others relevant to similar settings. Results were organised and analysed using the WHO health systems framework to identify geographical and evidence gaps. RESULTS: We found substantial literature on biomedical and clinical aspects of SCD but little on the design and implementation of programmes in community and Adivasi-specific contexts as well as on social determinants of SCD. There were regional gaps in knowledge in southern and northeast India. Wherever community-based programmes exist, they have originated in civil society initiatives and relatively limited state-led primary healthcare-based efforts pointing to weak agenda setting. CONCLUSION: Both research and action on SCD especially among tribal populations need immediate attention. While geospatial epidemiology has been well understood, gaps remain in context-specific knowledge for action in several parts, as well as evidence gaps across several health system building blocks, including governance and financing of care. Despite publication of a draft policy, delayed adoption and lapses in implementation have limited the response largely to local communities and non-governmental organisations.

Reviewing the ecological evidence base for management of emerging tropical zoonoses: Kyasanur Forest Disease in India as a case study.

Zoonoses disproportionately affect tropical communities and are associated with human modification and use of ecosystems. Effective management is hampered by poor ecological understanding of disease transmission and often focuses on human vaccination or treatment. Better ecological understanding of multi-vector and multi-host transmission, social and environmental factors altering human exposure, might enable a broader suite of management options. Options may include "ecological interventions" that target vectors or hosts and require good knowledge of underlying transmission processes, which may be more effective, economical, and long lasting than conventional approaches. New frameworks identify the hierarchical series of barriers that a pathogen needs to overcome before human spillover occurs and demonstrate how ecological interventions may strengthen these barriers and complement human-focused disease control. We extend these frameworks for vector-borne zoonoses, focusing on Kyasanur Forest Disease Virus (KFDV), a tick-borne, neglected zoonosis affecting poor forest communities in India, involving complex communities of tick and host species. We identify the hierarchical barriers to pathogen transmission targeted by existing management. We show that existing interventions mainly focus on human barriers (via personal protection and vaccination) or at barriers relating to Kyasanur Forest Disease (KFD) vectors (tick control on cattle and at the sites of host (monkey) deaths). We review the validity of existing management guidance for KFD through literature review and interviews with disease managers. Efficacy of interventions was difficult to quantify due to poor empirical understanding of KFDV-vector-host ecology, particularly the role of cattle and monkeys in the disease transmission cycle. Cattle are hypothesised to amplify tick populations. Monkeys may act as sentinels of human infection or are hypothesised to act as amplifying hosts for KFDV, but the spatial scale of risk arising from ticks infected via monkeys versus small mammal reservoirs is unclear. We identified 19 urgent research priorities for refinement of current management strategies or development of ecological interventions targeting vectors and host barriers to prevent disease spillover in the future.

'None of my ancestors ever discussed this disease before!' How disease information shapes adaptive capacity of marginalised rural populations in India.

Smallholder farmer and tribal communities are often characterised as marginalised and highly vulnerable to emerging zoonotic diseases due to their relatively poor access to healthcare, worse-off health outcomes, proximity to sources of disease risks, and their social and livelihood organisation. Yet, access to relevant and timely disease information that could strengthen their adaptive capacity remain challenging and poorly characterised in the empirical literature. This paper addresses this gap by exploring the role of disease information in shaping the adaptive capacity of smallholder farmer and tribal groups to Kyasanur Forest Disease (KFD), a tick-borne viral haemorrhagic fever. We carried out household surveys (n = 229) and in-depth interviews (n = 25) in two affected districts-Shimoga and Wayanad-in the Western Ghats region. Our findings suggest that, despite the generally limited awareness about KFD, access to disease information improved households' propensity to implement adaptation strategies relative to households that had no access to it. Of the variety of adaptation strategies implemented, vaccination, avoiding forest visits, wearing of protective clothing and footwear, application of dimethyl phthalate (DMP) oil and income diversification were identified by respondents as important adaptive measures during the outbreak seasons. Even so, we identified significant differences between individuals in exposure to disease information and its contribution to substantive adaptive action. Households reported several barriers to implement adaptation strategies including, lack of disease information, low efficacy of existing vaccine, distrust, religio-cultural sentiments, and livelihood concerns. We also found that informal information sharing presented a promising avenue from a health extension perspective albeit with trade-offs with potential distortion of the messages through misinformation and/or reporting bias. Altogether, our findings stress the importance of contextualising disease information and implementing interventions in a participatory way that sufficiently addresses the social determinants of health in order to bolster households' adaptive capacity to KFD and other neglected endemic zoonoses.

Examining tribal health inequalities around three forested sites in India: Results of a cross-sectional survey.

BACKGROUND: The data available for the health of Scheduled Tribes (ST) in India are often coarse-scale snapshots at district and state levels and fine-scale comparison within and across site is often not possible. In this paper, we examine the health inequalities between the ST and non-ST populations in two forested sites and compare the healthcare parameters for ST populations across three forested sites. METHODS: We conducted a cross-sectional household survey in three sites in and around three tiger reserves in Karnataka, Madhya Pradesh (MP) and Arunachal Pradesh (AP). In each site, multi-stage sampling and cluster analysis provided a representative sample of households across villages of 859 ST and non-ST households. We examined the sociodemographic and health-related information including self-reported illnesses and healthcare utilisation; from these, we explored the within-site health inequality patterns for the two sites and intersite differences among the ST households of the three sites. RESULTS: In Karnataka, the ST and non-ST differences favoured the latter with regard to socio-economic characteristics with no difference in self-reported illness/injuries or healthcare utilisation. In MP, both groups were similar with regard to socio-economic characteristics and healthcare utilisation. AP ST households reported the highest healthcare utilisation, while MP ST households reported the lowest care seeking at hospitals and relied on home networks and health workers. High tobacco consumption was noted among ST groups in all the sites. CONCLUSIONS: The ST and non-ST inequality patterns at a fine-scale were different between Karnataka and MP. The absence of health inequalities in MP indicates a uniform socio-geographical disadvantage while poor healthcare utilisation by ST people in Karnataka indicates health inequities. The ST households of AP reported the highest utilisation while those of MP reported the lowest. Programmes addressing the health inequalities of STs need to consider site-specific assessments of socio-geographical and health system factors.

Towards Health Equity and Transformative Action on tribal health (THETA) study to describe, explain and act on tribal health inequities in India: A health systems research study protocol.

Background: In India, heterogenous tribal populations are grouped together under a common category, Scheduled Tribe, for affirmative action. Many tribal communities are closely associated with forests and difficult-to-reach areas and have worse-off health and nutrition indicators. However, poor population health outcomes cannot be explained by geography alone. Social determinants of health, especially various social disadvantages, compound the problem of access and utilisation of health services and undermine their health and nutritional status. The Towards Health Equity and Transformative Action on tribal health (THETA) study has three objectives: (1) describe and analyse extent and patterns of health inequalities, (2) generate theoretical explanations, and (3) pilot an intervention to validate the explanation.     Methods: For objective 1, we will conduct household surveys in seven forest areas covering 2722 households in five states across India, along a gradient of socio-geographic disadvantage. For objective 2, we will purposefully select case studies illustrating processes through which socio-geographic disadvantages act at the individual, household/neighbourhood, village or population level, paying careful attention to the interactions across various known axes of inequity. We will use a realist evaluation approach with context-mechanism-outcome configurations generated from the wider literature on tribal health and results of objective 1. For objective 3, we will partner with willing stakeholders to design and pilot an equity-enhancing intervention, drawing on the theoretical explanation generated and evaluate it to further refine our final explanatory theory. Discussion: THETA project seeks to generate site-specific evidence to guide public health policy and programs to better contribute to equitable health in tribal populations. It fulfills the current gap in generating and testing explanatory social theories on the persistent and unfair accumulation of geographical and social disadvantage among tribal populations and finally examines if such approaches could help design equity-enhancing interventions to improve tribal health.