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IntroductionSickle 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.MethodsWe 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.ResultsWe 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.ConclusionBoth 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.

Background Nutritional inequality in India has been estimated typically using stunting, wasting and underweight separately which hide the overall magnitude and severity of undernutrition. We used the Composite Index of Anthropometric Failure (CIAF) that combines all three forms of anthropometric failures to assess the severity of undernutrition and identify the most vulnerable social groups and geographical hotspots. Method CIAF was constructed using child anthropometric data from the fourth round of the National Family Health Survey (NFHS-4, 2015–16). We considered 24 intersecting sub-groups based on intersections across four main axes of inequality i.e., caste [Scheduled Tribe (ST), Scheduled Caste (SC) and Other], economic position (poor and non-poor), place of residence (rural and urban) and gender (male and female) (eg. ST-Poor-Rural-Female). Cross-tabulation and logistic regression were done to assess the odds of CIAF among intersecting groups and to identify the most vulnerable sub-groups. Concentration curve was plotted to visualise economic position inequality in child undernutrition across caste categories. Choropleth maps were constructed and descriptive analysis of the district-level prevalence of CIAF was performed to identify the geographic clustering of undernutrition. Results Overall 55.32% of children were undernourished by CIAF and 6.62% of children have simultaneous three anthropometric failure. In sub-group analysis, children from ST and SC caste have a higher risk of undernutrition irrespective of other axis of inequality. Compared with CIAF, economic position inequality was amplified for simultaneous-three-failures among all caste categories. Economic position inequalities within caste are more for other caste and SC categories than with ST. Economic position, caste and gender based inequality in all three failures is more consistent in rural areas than with urban areas. Based on the analysis of the high prevalence in the co-occurrence of two or three failures, 111 districts from 12 of 29 states in India were identified across four geographic clusters. Conclusions The study shows social and eco-geographical clustering of multi-dimensional anthropometric failures and indicates the need for focused nutritional interventions among SC and ST community in general and ST children from the poor households. Furthermore, governance interventions that target entire regions across districts and states combined with decentralised planning are needed.

Background A large proportion of non-communicable diseases (NCDs) are treatable within primary health care (PHC) settings in a cost-effective manner. However, the utilization of PHCs for NCD care is comparatively low in India. The Access-to-Medicines (ATM) study examined whether (and how) interventions aimed at health service optimization alone or combined with community platform strengthening improve access to medicines at the primary health care level within the context of a local health system. Method A quasi-randomized cluster trial was used to assess the effectiveness of the intervention (18 months) implemented across 39 rural PHCs (clusters) of three sub-districts of Tumkur in southern India. The intervention was allocated randomly in a 1:1:1 sequence across PHCs and consisted of three arms: Arm A with a package of interventions aimed at health service delivery optimization; B for strengthening community platforms in addition to A; and the control arm. Group allocation was not blinded to providers and those who assessed outcomes. A household survey was used to understand health-seeking behaviour, access and out-of-pocket expenditure (OOP) on key anti-diabetic and anti-hypertension medicines among patients; facility surveys were used to assess the availability of medicines at PHCs. Primary outcomes of the study are the mean number of days of availability of antidiabetic and antihypertensive medicines at PHCs, the mean number of patients obtaining medicines from PHC and OOP expenses. Result The difference-in-difference estimate shows a statistically insignificant increase of 31.5 and 11.9 in mean days for diabetes and hypertension medicines availability respectively in the study arm A PHCs beyond the increase in the control arm. We further found that there was a statistically insignificant increase of 2.2 and 3.8 percentage points in the mean proportion of patients obtaining medicines from PHC in arm A and arm B respectively, beyond the increase in the control arm. Conclusion There were improvements in NCD medicine availability across PHCs, the number of patients accessing PHCs and reduction in OOP expenditure among patients, across the study arms as compared to the control arm; however, these differences were not statistically significant. Trial registration Trial registration number CTRI/2015/03/005640 . This trial was registered on 17/03/2015 in the Clinical Trial Registry of India (CTRI) after PHCs were enrolled in the study (retrospectively registered). The CTRI is the nodal agency of the Indian Council of Medical Research for registration of all clinical, experimental, field intervention and observation studies.

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.

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.

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.

Building capacity for Health Policy and Systems Research (HPSR) is critical for advancing the field in lower- and middle-income countries (LMICs). The India HPSR fellowship program is a home-grown capacity-building initiative, anchored at the Health Systems Transformation Platform (HSTP), New Delhi, and developed in collaboration with a network of institutes in India and abroad. In this practice-oriented commentary, we provide an overview of the fellowship program and critically reflect upon the learnings from working with three cohorts of fellows between 2020 and 2023. This commentary draws on routine program documentation (guidelines, faculty meeting reports, minutes of meetings of curricula and course development) as well as the perspectives of faculty and program managers associated with the fellowship. We have had several important learnings in the initial years of program implementation. One, it is important to iteratively modify globally available curricula and pedagogies on HPSR to suit country-specific requirements and include a strong component of ‘unlearning’ in such fellowships. Secondly, the goals of such fellowship programs need to be designed with country-specific contextual realities in mind. For instance, should publication of fellows’ work be an intended goal, then contextual deterrents to publication such as article processing fees, language barriers and work-related obligations of faculty and participants need to be addressed. Furthermore, to improve the policy translation of fellows’ work, such programs need to make broader efforts to strengthen research–policy–practice interfaces. Lastly, fellowship programs are cost-intensive, and outputs from them, such as papers or policy translation, are less immediate and less visible to donors. In the absence of these outputs, consistent funding can be a roadblock to sustaining these fellowships in LMICs. The experience of our fellowship program suggests that LMIC-led capacity-building initiatives on HPSR have the potential to influence changes in health systems and build the capacity of researchers to generate evidence for policy-making. The sharing of resources and teaching material through the fellowship can enable learning for all institutions involved. Furthermore, such initiatives can serve as a launchpad for the creation of regional and international HPSR communities of practice, with a focus on LMICs, thereby challenging epistemic injustice in teaching and learning HPSR.

The policy brief analyses program implementation gaps among Adivasi population in Southern Karnataka to support India's ‘Anemia Mukt Bharat’ and Karnataka's ‘Anemia Mukt Poushtika Karnataka’ initiatives which aims to improve anemia and nutrition status of the population This analysis is based on a Adivasi birth cohort. Preliminary results show higher underweight and anemia prevalence in Adivasi women than National Family Health Survey-5 estimates. A significant proportion of women also have thalassemia traits, suggesting a genetic predisposition. Given the burden of sickle cell disease and the undernutrition, an intersectoral approach is needed. A multistakeholder committee, including Adivasi women, experts from public health and nutrition, others are crucial to design culturally appropriate initiatives and prioritize hemoglobinopathy screening, ensuring effective strategies for this vulnerable population.