Research agenda and priorities identified
The medium-term research agenda and priority questions that emerged from the 4-year consultative process were organised into the following four groups, based on the nature of the research question (Table
1).
1)
Descriptive research that answers the ‘what’, ‘where’ and ‘when’ questions on the extent and nature and time trends of health inequities
2)
Explanatory research that answers the ‘why’ and ‘how’ questions on the pathways through which health inequities are created and the political or policy environment that facilitates the process
3)
Explanatory research that answers ‘how’ health systems facilitate or mitigate inequities in accessibility, affordability, acceptability and quality of healthcare
4)
Intervention research that answers the question ‘what works in addressing health inequities, in which context, and why?’
In this section, we present the medium-term (10-year) research agenda organised according to the above categories and, within each category, we also present areas identified as immediate priorities.
I. Descriptive research that answers the ‘what’, ‘where’ and ‘when’ questions on the extent and nature and time trends of health inequities
We have termed ‘descriptive’ studies that describe the existence of health inequities, note the nature of the gaps across locations and over time. Many descriptive studies identify economic position, caste, tribal status or sex as correlates of differentials in health outcomes. Some of them also track changes (or lack thereof) in health outcomes over time. Many social groups experiencing vulnerabilities and marginalisation have not been the subject of descriptive studies on health inequities.
Descriptive studies are important to establish that specific population groups experience health inequities, and to motivate further studies into the reasons underlying the observed inequities. In the Indian context, there are several vulnerable population groups about whom such information is not available. The research agenda identified 12 groups who have been least represented in the evidence on health inequities, about whom it is important to initiate descriptive studies on health inequities. Studies are needed which describe the health situation of these groups, locating it in the context of population averages or comparing it with the health outcomes of groups known to enjoy greater power and privileges. For each of these groups, studies are needed on health behaviours as well as health outcomes. Table
2 presents the research agenda for descriptive studies on the least studied population groups.
Table 2
A research agenda for descriptive studies on least studied population groups
Population groups to be studied
i. Muslims and other religious minorities ii. Nomadic tribes iii. Urban homeless iv. Migrants v. ‘Left behind’ households of migrants vi. Adolescents vii. Elderly viii. Single (never married/widowed/separated) ix. Persons living with physical/psychosocial disabilities x. Lesbian, Gay, Bisexual, Transgender, Queer, Intersex communities xi. Sex workers xii. People living with HIV/AIDS xiii. Communities living in the north-eastern states of India |
Health outcomes
i. Overall health needs of specific populations ii. Specific health conditions about which there is limited information (e.g. cervical cancer); specific health conditions in specific population groups (e.g. tuberculosis in elderly or internal migrants) iii. Ignored health needs of specific populations, e.g. beyond sexual and reproductive health for adolescents, beyond HIV for people living with HIV/AIDS iv. Nutritional status i. Quality of life, perceived psychological and physical wellbeing |
Health behaviours
i. Health literacy/awareness of healthy behaviours and symptoms of health problems ii. Care-seeking behaviour (from whom, after how many days, for which conditions) iii. Access and utilisation, unmet need for healthcare/treatment compliance/treatment completion and barriers to these iv. Experience with healthcare providers/in healthcare facilities |
The research agenda for descriptive studies on health inequities has a second part, which pertains to groups whose experience of health inequities is well established. Apart from some small-scale studies, there are a large number of studies analysing data from National Family Health Surveys, from Sample Registration Surveys and National Sample Surveys. For such population groups, the need is to go beyond the analysis of the next round of national surveys and to look at more complex themes even within descriptive studies.
The research agenda for more complex descriptive studies include the following:
1)
Looking at within-group health inequities in vulnerable groups (e.g. within the group of Dalits or Adivasis, of women and men, of low-income groups)
2)
Examining the consequences to health inequities of intersections of multiple vulnerabilities (e.g. elderly by class and gender, adolescents by rural/urban location and age, migrants by rural-to-urban or urban-to-urban migration)
3)
Changes over time and differences across geographic locations of health inequities (e.g. changes over time in caste-based or gender-based health inequities)
4)
Comparing relative position in the social gradient of different marginalised groups (e.g. Dalits compared to Adivasis compared to Muslims)
The set of immediate priorities for descriptive research studies called for a focus on persons living with disabilities, on the different communities in the north-east region of India, on within-group stratification among Dalit and Adivasi groups, and on health conditions beyond maternal and child health. A more detailed list is presented in Table
3.
Table 3
Immediate priorities identified for various types of research
I. Descriptive research | ∙ Persons living with physical or psychosocial disabilities; their health conditions beyond their disabilities, such as sexual and reproductive health; within-group variations by marital status, caste/tribal status/religion/location/combinations of these (e.g. the health of women living with disabilities in tribal communities) ∙ Health inequities across different communities in north-east India and their particular contexts ∙ Health inequities experienced within Dalit and Adivasi populations, e.g. Valmikis as compared to better-off Dalit groups, nomadic tribal groups ∙ Lesbian, Gay, Bisexual, Transgender, Queer, Intersex (LGBTQI) communities: desk review on policy and law, and overall health status across states of India ∙ Studies on inequities in health conditions and utilisation of healthcare services beyond maternal and child health ∙ Features of curricula/pedagogies address sexuality and gender in medical and allied health professions ∙ Structural determinants of access to healthcare by workers in the informal sector (by gender, caste, age, geographic location) ∙ The burden of mental health of people who experienced violence (interpersonal/social/communal/conflict-related) across gender and age |
II. Explanatory research related to social mechanisms and processes | In the immediate future, the focus needs to be on building theoretical, conceptual and methodological tools to make such research possible ∙ A conceptualisation of processes of inclusion, exclusion, discrimination, stigmatisation, marginalisation to better understand how social position results in unequal access to social determinants of health and health services ∙ Interfaces and interactions of macro-meso-microlevel factors in understanding health inequities ∙ Processes through which certain groups of people are rendered invisible in data. Alternatively, determinants of collection or non-collection of data on specific groups and categories of people, on some conditions versus others ∙ The process of evolving methodologies that capture the dynamics of health inequities without assuming static, timeless categories (for example, by caste, gender or economic position) |
III. Explanatory research related to health system | ∙ The impact of the growing presence of corporate private sector on access, availability, quality and affordability of healthcare ∙ The impact of philanthro-capitalism on global and national health governance, its consequences, and its impact on the corporate private sector ∙ The challenges in aligning bottom-up planning, top-down financing, and choice of technology (strategy and design), to assess if the tension between the three remain the same for groups across the social gradient ∙ Reasons why districts with similar levels of social determinants differ in terms of health system performance, features of governance that make the difference ∙ Perception of health workers/providers on the scope of community participation across the levels of the health system |
IV. Intervention research | ∙ Documentation of successful pilots, projects, innovations that have broken the barriers to equity and worked with the marginalised populations to see how some of them can be upscaled and integrated into the health system ∙ Type of interventions that worked or did not work for healthcare providers/health system to become responsive to specific needs of vulnerable groups (e.g., LGBTQI, migrants, people with disabilities, sex workers) ∙ Interventions that work to increase accountability to and participation by vulnerable groups ∙ Implementation and impact of Maternal Death Review for different populations (e.g. increased maternal death reporting, increased action taken over deaths reported, influence on the identification of ‘high-risk’ groups) ∙ Best practices of convergence models that bring out better health and nutrition outcomes especially of vulnerable groups ∙ Interventions that result in increasing the visibility and voice of marginalised groups ∙ Interventions that attract and retain workers to serve in marginalised areas |
II. Explanatory research that answers the ‘why’ and ‘how’ questions, on the pathways through which health inequities are created, and the political/policy environment that facilitates the process
For some population groups, including Dalits, Adivasis, low-income groups, women in specific settings, residents of rural areas, urban slums or poorly performing districts or states, existing research has focused on the nature and extent of the disadvantage they experience but has seldom gone deeper so as to understand the reasons for the disadvantage. Studies within these groups need to shift gear and move towards explanatory studies. Concerning each of these population groups, the research agenda for explanatory studies on social processes leading to health inequities calls for a focus on questions that explain how health inequities have come about or are sustained. The two broad strands of questions are (1) what are the social processes that translate a specific social location into disadvantages in terms of access to resources and power, and through these, to poor health? (e.g. social exclusion, discrimination, stigma which may be the pathway through which Adivasi households are deprived of access to health resources), and (2) what are the macro-level socioeconomic and political determinants creating conditions that widen or narrow social stratification, contributing to health inequities? (e.g. cuts in public spending on the social sector, informalisation of labour, corporate control over healthcare).
The outcome variables to be examined are similar to those listed for descriptive studies, namely relevant behaviours and health outcomes, including morbidity, mortality and well-being, and access to and utilisation of healthcare and the quality of care received. As in the case of descriptive research studies, so also with explanatory research studies, the research agenda calls for exploring multiple axes of vulnerabilities. Explanatory research explores whether the mechanisms and processes underlying inequities differ for groups experiencing multiple disadvantages and provides valuable insight. However, to study mechanisms and underlying processes, research also needs to focus on building theoretical, conceptual and methodological tools. The key research priorities identified are summarised in Table
3.
III. Explanatory research that answers ‘how’ health systems create, reinforce or mitigate inequities
The third category of research questions regards the role of the health system in facilitating or mitigating health inequities. The purpose of health systems is to ensure a basic level of healthcare for all. However, health systems are also social institutions, embedded in the fabric of the society of which they are a part [
9]. As a consequence, unless explicit and conscious policy measures are adopted, health systems are most likely to reflect the hierarchies and power relations of the context within which they are located. Thus, while health systems have the potential to uphold values of equitable and universal access, and respect the human rights of all its users, they could also reinforce and perpetuate health inequities and be blind to discrimination against vulnerable populations. For all these reasons, health systems are a crucial domain of inquiry when researching the mechanisms underlying health inequities.
Explanatory studies are needed on the role of health systems in caste, gender and socioeconomic status-based inequities in health in the poor health of various vulnerable population groups, similar to those identified for research questions in category two above. With respect to each of these population groups, the research agenda for explanatory studies on health inequities calls for a focus on questions that explain how health inequities have come about and are sustained. The two broad strands of questions are (1) how do the structure of the health system (e.g. public/private mix, distribution of services across levels of care, the extent of decentralisation, financing), the design of service delivery, the distribution of human and financial resources, and the processes of decision-making within the health system affect health inequities? (e.g. the requirement of residence permits may exclude migrant workers from accessing services, the lack of a woman doctor may discourage women from accessing gynaecological services of a sensitive nature); and (2) how do factors at the global and national levels influence the structure and functioning of the health system (e.g. government policies on the privatisation of healthcare, World Trade Organisation’s intervention to alter the pharmaceutical scenario, employment opportunities abroad for nurses).
The outcome variables of interest are accessibility, acceptability, affordability and quality of healthcare services and inequities, and their socioeconomic consequences in these across population groups. The key research priorities identified are summarised in Table
3.
IV. Intervention research that answers the question ‘what works in addressing health inequities, in which context, and why?’
Finally, moving from asking ‘what’, ‘why’ and ‘how’ questions for various population groups and existing health inequities, it is crucial for research to also support action in terms of developing or evaluating interventions that aim to address the health inequities identified. We classified the different interventions that deal with health inequities into the following categories: (1) interventions aimed at improving health outcomes (for instance, those aimed at reducing infant and maternal mortality); (2) interventions that target specific population groups (like children or elderly) or locations (like high priority districts); (3) interventions that attempt to improve awareness or influence health-related behaviours; and (4) interventions that aim to improve access to social determinants of health, thereby improving their health outcome (like access to better housing or nutritious food).
The research agenda on interventions research called for a focus on both descriptive and explanatory studies. There is a dearth of descriptive studies that explain in detail the health inequities addressed by the intervention, actors involved, strategies adopted, the theory of change of the intervention, challenges of implementation, and the outcomes in terms of success or failure in reducing the health inequities targeted.
The research agenda for explanatory studies on health equity interventions include studies that examine the reasons why some interventions succeed while others do not. Among the range of factors are the context, actors, strategies, implementation process and governance, not only at the local level but also at the macro level. The key research priorities identified for intervention research are summarised in Table
3.
The 4-year-long exercise described herein had many limitations. The research gaps identified were based on a synthesis exercise limited to studies published in the English language, which may have resulted in the exclusion of salient evidence published in other Indian languages. Further, the consultative process with stakeholders in a national seminar and through online calls for participation did not yield the expected results. Despite receiving more than 150 responses, some of the population groups on whom there was a major evidence gap were poorly represented in the research agenda, and we had to introduce an additional step of consultation with key informants to address this. Further, the short list of immediate priorities includes not only what emerged through the broad-based consultations but also specific concerns of a small group of experts. Finally, our consultations included civil society actors representing the interests and concerns of many vulnerable groups, and not the groups themselves, which would have called for resources that were not within the scope of our project.
Despite these limitations, the process adopted was consultative and inclusive, drew stakeholders from many disciplines including early and mid-career researchers and senior experts. The medium-term research agenda and immediate priorities for health equity research in India include a comprehensive range of research questions, ranging from the descriptive to the analytical, and encompassing intervention research. While much of the research agenda consists of empirical research questions, there was also an emphasis on theory-building based on findings on the ground. This was based on the finding from Step 1 of this exercise that public health research in health inequities seldom based itself on theoretical knowledge either from within the discipline or from other disciplines.