Basic demographic information forms the basis of policy, planning, and public discourse.  The system through which governments record vital events such as births and deaths is the civil registration system. Defined by the United Nations as “the continuous, permanent, compulsory, and universal recording of the occurrence and characteristics of vital events,” it forms the basis for identity, citizenship, and civil rights. Its importance is globally recognised and more countries have worked towards establishing efficient and comprehensive civil registration systems.

In India the groundwork for the present day civil registration system was laid down by the “Registration of Births and Deaths Act” in 1969, which gives guidelines to states to establish civil registration systems. Accurate information about births and deaths combined with accurate cause of death data could result in more effective policies and improved assessment of health systems. In order to understand if and how the present civil registration system is contributing to policymaking, we filed a request for information in August 2011 in one of the districts of south India under the Right to Information act. [1] We requested the district statistical officer provide us disaggregated data on causes of deaths in one of the taluks (administrative unit within a district) for the year 2010. We wanted to know how many men and women were dying and for what causes. We also sought disaggregated cause of death data for people below the poverty line. This information is routinely collected by the civil registration authorities, so we assumed it would be easy to obtain. However, the information was denied, stating that it is violation of privacy. But, we had not asked for any individual information, merely data collected at a district level.

When we contacted a higher official at the state level (provincial level), we were again denied information on the grounds that disaggregated data were not available. So, in summary, individual data on the date of death, socio-economic status, cause of death, and other such details are being collected, but are merely being summed up without any effort at making it useful for decision-making and policies. It was evident that health policymakers in India currently have to rely on demographic representative sample surveys in spite of a civil registration system. The question that we ask here is when cause of death data is not available to health policymakers, on what basis are healthcare policies formulated or evaluated?

Progress towards the Millennium Development Goals relies on accurate data on causes of death (among other things). The past decades have witnessed a wave of health reforms in many low and middle income countries. However, they cannot be evaluated accurately in almost every case as there is  poor investment in building good systems of reporting routine data. A good example is Mexico where there has been equal investment in health information systems as in healthcare reforms. [2] This has resulted in more effective knowledge about the consequences of healthcare reforms than anywhere else in the world.

The state of Karnataka records more than 90% of registrations in terms of births and deaths; it is one of the best states according to the Indian government’s recent assessment. However, without relevant segregation into more specific information, this raw data is useless for health policy makers and perhaps is being collected as a bureaucratic exercise rather than enriching decision-making and policy. Accurate information on causes of death can help build effective health policy. For instance, routine data from civil registration in the United Kingdom contributed to identifying the causal association between smoking and lung cancer in the 1950s. [3] Because of the lack of reliable vital statistics from civil registration systems, the long-term social, economic, and demographic impact of major diseases in India can only be estimated from models or resource-intensive surveys.

Ranging from lack of awareness among people on one hand, to poor demand from policymakers on the other, many issues plague the Indian civil registration system. We strongly appeal for simple measures like disaggregation and public availability of such data; healthcare workers, policy makers, journalists, and citizens should all have access to these data. In response to a letter we wrote to the registrar general of India, there has recently been a direction to all the chief registrars of states to put in place steps to make this data easily accessible to healthcare workers and policy makers. Nearly a year has passed since the letter. The data continues to be collected, aggregated, and the effort is wasted as no disaggregated data is available to the health system or the public.

We would like to thank Kuruvila Daniel of IPH, Bangalore for help with the applications under the Right to Information Act.

Competing interests: Both authors declare that that we have read and understood the BMJ Group policy on declaration of interests and we have no relevant interests to declare.

The views presented by the authors are solely theirs and not of their affiliated institution.

B L Himabindu is a research associate at the Institute of Public Health, Bangalore.

N S Prashanth is a Faculty and PhD Fellow at the Institute of Public Health, Bangalore. His research interests lie in health systems research and evaluation methods.

References:
[1] The Indian Right to Information Act is a powerful freedom of information legislation that enables citizens to seek a variety of information available with public authorities.
[2] Gakidou et al. Assessing the effect of the 2001-06 Mexican health reform: an interim report card, Lancet, 2006 Nov 25;368(9550):1920-35.
[3] Doll R & Hill A B. Lung cancer and other causes of death in relation to Smoking, BMJ 2:1071-81, 1956.