The COVID-19 pandemic intensified discussions around health and well-being. The general method to gauge the health of a populace is to measure its mortality or life expectancy. But a more comprehensive understanding must also include morbidity – the incidence of diseases – to account for years of life partially lost.
A holistic approach to estimate the burden of diseases incorporates both mortality and morbidity, and is measured with a metric called disability-adjusted life years (DALYs).
Despite remarkable improvements in life expectancy and reductions in child mortality rates in the last few decades, India still faces a significant battle against various health issues. One worrying feature of the public health spectrum is the rapid increase in the prevalence of some non-communicable diseases, along with the persistence of some communicable diseases.
Research focus v. disease burden
The crucial role of healthcare research in advancing public health is undeniable, yet India’s research spending remains low. A related concern is whether these funds effectively address the country’s health needs and prioritise the right disease areas.
Along with advancements in healthcare delivery, well-directed research is essential to improve public health. Public funding is the primary fund source for health research in India. Are these funds being spent on the local needs? Our recent study, presented at the European Forum for Studies of Policies for Science and Innovation (Eu-SPRI 2023), highlights some striking mismatches.
We used the World Health Organisation’s 2000-2019 ‘Global Health Estimates’ on DALYs to estimate the burden of diseases and the number of scientific publications (from the Web of Science database) to evaluate research efforts.
Relative disease burden (% of DALYs) v. research efforts (% of papers) for cardiovascular diseases, cancers, neonatal conditions, and tuberculosis for the world (W), high-income countries (HIC), upper middle-income countries (UMIC), India (IN), and lower income countries (LIC).
We found only a small correlation between the burden fraction and the publications fraction associated with a given disease in India – meaning the country’s health research focus and its actual health needs are divergent. On the other hand, the alignment was highest in high-income countries (HICs) – that is, in these countries, research is more related to their health needs. The alignment was also better in Brazil and China, India’s BRICS compatriots.
There are several patterns and drivers for diseases that are relatively under- or over-researched. In India, neonatal conditions have the highest burden for a single disease category, contributing around 14% of the national burden. Yet it attracts scant research interest: only around 2% of the total research publications share in the country.
However, it’s important to recognise that ramping up research isn’t always the answer to a high disease burden. In cases such as neonatal conditions or diarrhoeal diseases, effectively implementing existing medical knowledge via a robust public infrastructure and healthcare delivery systems can significantly alleviate the disease burden. This is because knowledge and remedies are available but insufficiently implemented in India, reflecting inadequacies in its health, transportation, and water infrastructures more than gaps in research efforts.
This said, cardiovascular and respiratory diseases receive less attention worldwide as well as in India. Cardiovascular diseases account for a substantial part of the disease burden across income group countries: about 20% in HICs and around 22% in upper-middle-income countries (UMICs). But only about 10% of publications from both HICs and UMICs are dedicated to them. This gap is even wider in India, where cardiovascular diseases contribute to around 16% of the disease burden but command the attention of only about 5% of publications.
Some other diseases, usually with a considerably high burden in HICs, have significantly better research focus than the actual disease burden, both in India and elsewhere. Cancer is a prime example: it accounts for less than 5% of India’s disease burden but is the subject of 22% of the country’s research publications. In HICs, cancer’s disease burden is about 18% and research share is about 25%.
India’s strengths
India’s health research also has important strengths. Diseases like tuberculosis (TB) and diabetes are significant health challenges for India, contributing to around 7% and around 2.5% of the disease burden. And they also attract considerable research attention, with approximately 5% and 7% of India’s research publications dedicated to tuberculosis and diabetes, respectively. On this front, India is making a substantial contribution to its own needs and the global knowledge pool.
Finally, malaria and HIV/AIDS fall in an interesting category: they have a low burden in India, but the research that happens in India could ‘compensate’ for the lower research capacity in low-income countries (LICs) where these diseases are more prevalent. Malaria accounts for around 0.5% of India’s disease burden and 2.5% of publication focus; similarly, the figures for HIV/AIDS are ~1% and 2.5%, respectively.
Causes of health research misalignment
Our study highlights a striking issue: the research priorities in India (according to research publications) are misaligned with the burden of disease affecting the country. Why is this misalignment occurring? And why is it higher in India than the global average?
As noted earlier, in the case of neonatal conditions, the misalignment is likely due to weaknesses in India’s healthcare delivery system rather than a lack of research.
On other counts, one reason for misalignment is that the choice of research topics in India often mirrors the priorities of HICs. One factor that could probably be driving this is market demand concentrated around the health needs of HICs. This demand influences the research priorities of private investment, with spillover effects onto universities across the world.
Additionally, the global research agenda is usually driven by the Global North’s research priorities. Subsequently, the more prestigious scientific journals, which are all based in the Global North, publish more research papers on these topics. The prestige associated with these topics in international science circles also dictates the availability of global health funding.
India’s research agenda
Given these forces, how must India set its health research agenda?
First: India must enhance its public health infrastructure, which includes increasing research on public health, healthcare systems, and implementation of clinical medicine. Second: India’s scientific policy should prioritise research on under-studied diseases, such as cardiovascular and respiratory diseases, and perhaps reconsider support for over-funded areas like cancer research.
While diseases like HIV/AIDS and malaria don’t pose a significant challenge for India, investing in them is crucial to address global health challenges. India can significantly contribute to alleviating the disease burden in LICs that may lack the necessary research capacity.
Finally, India’s primary research funding agencies must devise coherent, well-reasoned strategies for their mid- and long-term objectives. Clear policies, priorities, and systems for health research governance are necessary to better align research funding with the country’s actual health needs.
Moumita Koley is an STI Policy Researcher, DST-CPR, IISc, and Consultant, International Science Council. Ismael Rafols is a senior researcher at CWTS Univ. Leiden, & UNESCO Chair on Diversity and Inclusion in Global Science.
