India has a population of 1.2 billion people, whereof three quarters live in rural areas. Parts of India have a topology that makes access difficult and travel time-consuming. Nearly 400 million people in India live on less than 1.25 USD (PPP) per day, and 44 percent of all children are malnourished and the infant and women mortality rates are still unacceptably high despite earnest efforts by the government. Strong economic growth in the last decades has fuelled migration from rural to urban areas.

Against this backdrop the challenges that India’s healthcare system faces in providing care to its citizens are substantial. There is a rise in infectious diseases as well as in non-com­municable diseases, giving India’s healthcare a double burden to combat. At the same time India’s public spending on health is extremely low. In 2009 it amounted to just 1.1 per cent of GDP. If public funds, private funds and external flows are combined, the total health expenditure amounts to 4.1 per cent of GDP. With a capacity crunch in the public healthcare system, patients have become dependent on private healthcare providers who currently treat 78 per cent of outpatients and 60 per cent inpatients. Further, with an under­developed healthcare insurance system high out-of-pocket expenditures for healthcare result, which can be prohibitive for access to care or drive people into poverty. To mitigate this undesirable situation, India’s government plans to increase public health investment from 1.1 per cent to 2–3 per cent of GDP over the next five years.

However, already in 2005 the Government launched the National Rural Health Mission (NRHM), a health programme in mission mode to improve the health system and the health status of the people, especially for those who live in the rural areas, and provide universal access to equitable, affordable, and quality healthcare. As a component of NRHM, measurement and reporting of clinical output and performance indicators has been employed from the sub-district and are regularly reported and aggregated through increas­ing administrative levels up to the national level. This data enables the state and national health ministries to plan programmes and evaluate their impact.

The main trends in the debate on healthcare have focused on major legislative gaps, lack of uniform standards for healthcare leading to the current fragmented and uncontrolled nature of the private sector and ineffective implementation in the public sector. Experts have pointed out that the government needs to adopt a broader healthcare approach, while at the same time taking measures to achieve additional progress in seven prioritised target areas. Based on this, one of the healthcare priorities in the next five years will be to focus all existing national health programmes under the umbrella of the NRHM and extend its reach to urban areas.

Over the last 30 years an extensive national cancer registry has developed, which includes both population- and hospital-based disease registries. Current developments include an expansion of hospital-based cancer registries to look at patterns of care and survival, bringing in more details on cancer cases affecting three sites; breast, head & neck, and cervix. The process of establishing a national stroke registry has recently been initiated and plans exist for future national diabetes and cardiovascular disease registries.

A chronic kidney disease registry is functioning under the Indian Society of Nephrology; some 50–60 000 cases are described in the registry, but no follow-up of the patients is made, which reduces the value of the collected data. Recently, a 3-year grant from a gov­ernmental funding agency has allowed a multi-centric study to begin to establish the prev­alence of CKD in India.

Recent changes in the legislation governing transplants in India and a commitment from the government to fund an improved transplant registry are interesting.

In a study by the Cardiological Society of India–Kerala Chapter (CSI-K) an extensive registry was constructed containing presentation, management, and in-hospital outcomes of 25 748 Acute Coronary Syndrome patients across 125 hospitals throughout Kerala. The resulting findings and recommendations are currently being integrated in a quality-im­provement programme that will be rolled out shortly under the auspices of the Centre for Chronic Disease Control (CCDC). The CCDC also runs translational research projects investigating the benefits of low-cost handheld units for clinical decision support and reg­istry submission. The role of other players in the Indian Health Management Information System (HMIS), like the Central Bureau of Health Intelligence and the Statistics Division of the Department of Health and Family Welfare is also being discussed.

There is no significant debate in India relating to patients’ integrity vis-à-vis disease regis­tries, or other modes of collection and use of personal clinical data and legislation in this area is not yet in place. The public discourse is rather focused on how to overcome the capacity deficit in the public health system, which leads to challenges of access. However, other challenges exist in data collection within the healthcare system; the absence of a unique personal identifier, the lack of human resources within the public healthcare sys­tem, and the absence of parts of the legislative framework that could ensure better cover­age and consistency in data collected.

There is evidence that data collected in the healthcare system, be it disease surveillance, clinical outcome and performance monitoring or disease registries, have come to good use in policy formulation and quality improvement in the healthcare system.

Under the NRHM, the process of performance-based monitoring was initiated emphasizing ‘accountability’ by way of engaging various stakeholders including the end-users. The Ministry of Health and Family Welfare rewards states for better performance under the NRHM, based on the health outcome indicators. Incentives in terms of additional alloca­tion and disincentives in terms of budget cuts are also part of the national government directives to the states for the NRHM planning process. Several state governments also have incentives in terms of honouring better-performing districts based on specific param­eters.

The processes for health measurement will get a major boost in India’s 12th Five-Year Plan (2012–2017) as it proposes a composite Health Information System (HIS) that would in­corporate and strengthen many of the important components discussed in this report.