Disaggregated Data : Urgent Need for Public Health in India

MDGs (2000-2015)
Sustainable Development Goals are out  and the target is well set. With most goals related to the premise of Universal Health Coverage (UHC), health for all and all ages forms one of the most important agendas of the SDGs, as they are called. A comprehensive reading of the WHO report titled, World Health Statistics 2016, provides comprehensive, detailed and tangible account of the role of SDGs in the dream of UHC by listing the vital statistics the organization could gather and estimate on health for the 194 member countries. SDGs are the successor of Millennium Development Goals (MDGs). The Millennium Development Goals (MDGs) were the eight international development goals for the year 2015 that had been established following the Millennium Summit of the United Nations in 2000, following the adoption of the United Nations Millennium Declaration. 

There are 17 SDGs for the year 2015-2030. Most of them are related to health in one way or the other. Ending poverty and hunger, good health and well-being, quality education, gender equality, clean water and sanitation, decent work and economic growth, reduced inequalities, responsible consumption and production, life on land, life below water, climate action, affordable and clean energy : all these according to my ken form a very close and interdependent relationship with the status of the population health in any country. 

Research after research has proved, verified and concluded that socio-economic status of a family is one of the biggest determinants of the health of the family. A poor family is more likely to fall sick, remain sick and die sick due to inadequate money, accessibility and affordability of health care as compared to those who are comparatively well-off. A poor family is more likely to live in unclean environments in high-density areas where environmental hygiene is compromised, children earning money in early ages is far more important than their education,  especially in urban slums. Lack of appropriate nutrition to pregnant women translates to wasting and stunting in children which further increases their risk of developing chronic diseases as they age; chronic hunger then becomes a big detriment towards the dream of UHC. It is time that gender is also included as one of the social determinants of health because the prejudice and discrimination that girls face in some families manifests in their poor health in growing years despite inherent genetic trait to be healthier than boys. 

A woman's health considerably impacts the health of the nation. Babies born to emaciated and weak mothers are more at risk towards developing early infections after birth. Weak mothers, anaemic mothers, and under-age mothers are more prone to maternity related complications and carry a huge risk of mortality and disability during delivery. According to the WHO report 2016, in India 94% of proportion of population is using improved drinking water sources while only 40% using the improved sanitation. This clearly shows that India has to improve a lot in the sector of improved sanitation facilities to be able to prevent gastro-intestinal diseases, diarrhoea and other ailments that spread due to inadequate sanitation. World Hunger is a phenomenon that can be attributed to shabby distribution, neglecting the needs of those in destitution. While recently there is an announcement of a  program for distribution of eggs to children in aanganwaadis, it remains to be seen how honestly and strictly the program is implemented. The problem hardly lies in spineless strategies, but what really eats away their impact is the nonchalance of those who implement them, their conspicuous apathy towards the cause of UHC partly explainable by their ignorance and lack of understanding of the personal stake that they have which will directly affect Indian posterity. Climate change is also an important part of Ecological Public Health, Earth is warmer by one degree Celsius and that has led to a lot of imbalance in our ecology. With a warmer earth, glaciers are melting, under-water ecology is under a grave threat of extinction, there is an increased risk of forest/bush fires, floods, drought- everything that poses peril to the sustainable development. Clean energy is also related to health with air pollution becoming increasingly a public health burden with increased urbanization. 

In brief we have understood that SDGs are health oriented and in these 15 years time, it is indispensable that the progress is regularly monitored, evaluated and reforms made based on the findings. And this calls for a very potent tool: DATA. 

Imagine a location where there is a disease which affects a particular section of society, and even in that a particular gender and then a particular age, how would you understand the population that needs intervention or garner the subjects of an impending epidemiological study? Since diabetes epidemiology forms my area of interest, let me explain it using its example. In India, we do not have a comprehensive and complete data on the people who have been diagnosed with diabetes disaggregated by age, gender, income-levels and locality. Lack of such data leads to fragmentation in health care and leads to un-organized planning towards programs that focus on prevention and health promotion. But diabetes is an ambitious example, some would quote, when we do not even have a proper CRVS system to log the mortality data and it causes. Morality data is more amenable to proper measures as compared to morbidity and disability. But if India has to perform with regard to SDGs it must be equipped professionally with an expertise to inculcate data gathering and collection as per international standard to avoid any ambiguity. That calls for technically robust health workforce, health systems and somewhere also,  a radical change. 

In many countries, statistical and health information systems are weak and the underlying empirical data may not be available or may be of poor quality. Only 70 countries currently provide WHO with regular data on mortality by age, sex, and cause of death which are required for more than a dozen indicators in SDGs. The most extensive standardized disaggregated data are available for indicators in the category of reproductive, maternal, newborn and child health. Health is not an isolated department, health of a population depends to a large extent to domains outside of health such as agriculture, transportation, human rights, education etc. Closer collaboration, thus, between health and other sectors is required to ensure that health monitoring takes into account data on determinants and risk factors for health and that other sectors give due attention to the health statistics. There is a need for much greater disaggregation of data, including statistics disaggregated by sex, age, income wealth, education, race, ethnicity, migratory status, disability and geographic location or other characteristics in order to track and identify disadvantaged population within countries. Household surveys are primary source of disaggregated health data on demographic and socio-economic characteristics and can be used to identify disadvantaged populations. 

Strengthening health information system of a country is a priority. In future, overall data picture may improve as a result of innovative approaches based on Information and Communication technologies and the trend towards, "open data", that is the release of data by government agencies, businesses, non-profit organizations, researchers and other private entities. Given the large data gaps, and the lack of timely data for many indicators, it is often necessary to use statistical models to obtain a picture of regional and global situation, including comparable statistics for use by countries. Most countries still lack adequate death registration capacity. An estimated 53% of deaths go unregistered world-wide, and progress in improving death registration in developing countries has been slow. Cyclical process of monitoring, review and remedial action will be critically important in ensuring progress towards UHC. 

Disaggregated data enable policy-makers to identify vulnerable populations in the context of reform towards UHC and to direct resources accordingly. Data can also be used to hold governments to account. Investments are thus needed in regular household surveys and electronic facility reporting systems. Whenever possible, data collection should include small area markers (such as postal codes) or individual identifier such as personal identification numbers) that permit cross linkages between different data sources. Countries should move towards implementing standardized electronic record keeping systems while ensuring that personal data are protected and used appropriately. In particular, more data are often needed on direct program performance using coverage indicators and related quality-of-care measures. 

And for all this disaggregated data story to come to fruition health systems strengthening forms a vital part. It calls for strengthening a country's capacity to collect, compile, share, disaggregate, analyze, disseminate and use data at all levels of health systems. Data has emerged as a very potent weapon in these times, extreme meticulousness must be exercised while collecting data, especially when it comes to public health for a mere mistake can lead to horrendous consequences. Disaggregated data and health systems thus go hand in hand and India must train its public health workforce keeping these two in mind and also the approach towards regular monitoring of the SDGs. While at one hand we have Professor Reddy of PHFI advocating need for increased attention to the face of public health in India, the budge allocation towards health remains grim. Seems like our politicians have not yet woken up to the cause of better health and well-being of its citizens and the increasing menace of non-communicable diseases (NCDs). 

India still needs to have a revolution in health and that can only happen when we have a team of people involved in health and health care realize the stake in their work and not merely discharge them as means to earn an emolument.


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