A woman walks past a graffiti on a street amidst the spread of COVID-19, in Mumbai, May 10, 2021. Photo: Reuters/Francis Mascarenhas
For decades, the world has been aware of health inequalities. But it took a worldwide pandemic to bring this to light and wake everyone up to the fact that we have been sleepwalking towards a health disparities crisis. To tackle inequalities in any sector, the foremost step is to be able to measure them through adequate data. Lack of timely and interoperable data prevents us from really understanding our communities and how we can help in empowering them further.
The unawareness of health inequalities fueled by lack of high-quality data remains a global issue. However, in India, it is much worse. The country’s propensity of moving ahead with new decisions and approvals has been backed by invisible data. Instances like these have occurred far too many times in the past two years. As we are dealing with one of the most stressed health situations thus far, which is further accompanied by water crisis, heatwaves and other challenges, it is imperative to take a hard look at how we collect and use data in the healthcare sector.
India’s lack of data
The concept of collecting household and community data on health needs has so far received very little attention in India. Data on inequities in health, as well as other sectors like education and poverty, is still far too fragmented. Poor data has resulted in an inability to fully comprehend the difficulties. We still don’t know who and how many people are suffering from poor health in different parts of the country.
In 2019, the Indian Council of Medical Research stated that “data on health and demographics in India is plagued by inaccurate information, overestimations, under and over-reporting, which lead to hindrances in policy planning.” Prior to this, in 2017, the then-Union health secretary C.K. Mishra admitted openly that India has a problem with missing data and untrustworthy numbers. India’s health statistical ecosystem is still at a nascent stage and needs a lot more attention for working towards tackling inequalities.
Like people in other parts of the world, Indians toalso face significant disparities in access, cost and quality of healthcare depending on their class, caste, religion, gender identity, age and/or other demographic and socioeconomic characteristics.
Rich data helps to enhance our understanding of disease and disability in this regard. It will also help identify the root causes of health inequalities in a specific region. Data identified and analysed in a timely manner can stop the spread of disease and prevent it from reaching a point from which no turning back is possible. Varied datasets collected and maintained over a period of time help in planning specific and targeted health interventions. These targeted health interventions lead to improved health outcomes by providing true personalised care and support for the most deprived.
Further, cross cutting, innovative, efficient and collaborative data systems help in making sure that everyone, everywhere has access to healthcare facilities. The secondary approaches of managing data have been found useful in discovery and new innovations in the present digital age. In India, we can use the data to drive these innovations in decreasing the inequalities.
Efficient use of data
Mere data capture is never sufficient. The health organisations responsible need to review the quality and accuracy of the data collected. Data for all possible communities, social groups and individuals should be systematically updated so that when there are situations of risk, the ones in greatest need can be easily and quickly identified.
Some kinds of data which can help us look beyond what happens inside the four walls of healthcare centres are: social needs data, clinical data for different groups of people, demographic and socio-economic data from the government, medical claims and responses from people themselves.
While using data, it becomes important to identify and remove any kind of structural bias present. Creating fair and equitable data-based decision systems will help us pass meaningful laws and governance strategies. Apart from this, it is necessary that the data is shared between different departments and agencies. This will not only keep important stakeholders in loop but also ensure accountability and transparency.
Need for greater investment
To regularly collect and monitor data higher investment in technological interventions are required. This investment will also aid in the better training of those in charge of comprehending datasets and developing health policies. Even if we have good data, if we have untrained personnel, the figures will be meaningless.
India must continue to invest in the right areas to ensure that data sets are inclusive and representative. The country is yet to unlock the full potential of its health statistical environment. Big investments will also help in testing what methods work best to address the determinants of inequalities.
Every data point represents a story. Timely and comprehensive datasets show the reality. A refined and comprehensive data strategy will open new opportunities for everyone to embrace upon. Their efficient use will help in developing better policies and line of actions to tackle inequalities.
Mahek Nankani is an assistant programme manager at the Takshashila Institution. She tweets at @maheknankani.