India’s Mother and Child Tracking System
This piece is a part of a collection of research that demonstrates how data-intensive systems that are built to deliver reproductive and maternal healthcare are not adequately prioritising equality and privacy.
We use this research to show the harms that come when patient data is not protected and is exploited. We believe that accessing reproductive and maternal healthcare should not require giving up your human rights, including privacy.
India’s Mother and Child Tracking System (MCTS) is a system that collects vast amounts of data about pregnant people, children, and families. It is an initiative by the Ministry of Health and Family Welfare in India, and was first trialled in 2009. It was then rolled out nation-wide in 2011. Its declared purpose, as stated in the press release accompanying it, was to facilitate “ensuring timely delivery of full spectrum of health care services to pregnant women and children up to 5 years of age through name-based tracking of each beneficiary”. The system’s expected benefit was “to help in reduction of infant Mortality Rate and Maternal Mortality Rate”.
The system is comprised of:
- A database “capturing detailed information about beneficiaries, like unique ID, name, address, contact details, location and cast”; and
- A maternal health card, containing a unique 16-digit unique identification number, containing the codes on the state, district, block, health centre woman and/or child serial code and serial number.
- Mobile-based SMS technology “to communicate with beneficiaries and grassroots level health care service providers as well as health and family welfare policy makers, health managers and health administrators at different tiers of the health care delivery system”.
- A call centre, the Mother and Child Tracking Facilitation Centre, which verifies MCTS records, besides collecting feedback on the provision of services.
It is understood that the system collects data on each visit of the woman from conception to 42 days postpartum. As of 2018, 120 million pregnant women and 110 million children were registered on the portal.
The system continues to be developed, and is gradually being replaced by the Reproductive and Child Health portal, which constitutes a significant expansion insofar as it aims to track eligible couples, in addition to pregnant beneficiaries.
What kind of data is collected by the Mother and Child Tracking System?
Research undertaken by the Center for Internet and Society suggests that the categories of data captured by the system are broader than those listed in the official statement introducing the system. The Mother and Child Tracking System collects:
- personal details of all pregnant women;
- antenatal check-up charts for registered pregnant women;
- data of all visits from conception to 42 days post-partum;
- immunisation schedules of all children up to 5 years age;
- family planning and counselling requirements for sterilisation;
- demographic details and contact numbers of all health workers in each facility; and
- details of all welfare schemes being availed by the beneficiaries.
It should be noted that India does not have a data protection framework. Therefore, the data collected by the system is ostensibly only subject to patient-healthcare professional confidentiality frameworks. This situation exacerbates the risk of data misuse.
What are the concerns with the Mother and Child Tracking System?
In India, access to a range of welfare services is conditional upon linkage with the national biometric ID card, also known as “Aadhaar”. Ranging from access to food rations to maternity benefits, the linkage or “seeding” of the Aadhaar card has become essential for those most vulnerable in India to access state support. The Mother and Child Tracking System is not an exception.
According to the Center for Internet and Society’s research, the government has been in the process of linking Aadhaar to the Mother and Child Tracking System since 2015, for the purpose of authenticating beneficiaries and health workers at the point of service delivery and for distributing maternity benefits within the Janani Suraksha Yojana cash assistance scheme.
While it is unclear whether linkage between Aadhaar and the Mother and Child Tracking System has been completed, the disadvantages of such linkage are self-evident.
Lack of ID
As of 2019, an estimated 102 million people did not have an Aadhaar card. Those without it find themselves excluded from government benefits, and can easily fall through the cracks. Making Aadhaar details mandatory could directly contribute to the denial of service to legitimate patients and beneficiaries, as has already been seen in some cases.
ID systems link together diverse sets of information about an individual, and allow tracking and profiling. ID systems can surveil: giving the state and private sector a 360-degree view of the person. All three of these are made worse by function creep - the spread of an identity system to more and more aspects of people’s lives.
At its inception, the purpose of the Mother and Child Tracking System was to achieve health benefits for pregnant women. However, the system is also part of the infrastructure that facilitates the delivery of cash assistance for expecting mothers, known as Janani Suraksha Yojana (“Safe Motherhood Scheme”). Such was the purpose behind linking Aadhaar with the Mother and Child Tracking System, as explained by a Ministry of Health & Family Welfare report which justified the move as one done “in order to track subsidies to eligible women”. In other words, the purpose of the Mother and Child Tracking System is not merely to monitor the health of pregnant women - but to mediate their access to a government benefit intended for expecting women. The Safe Motherhood Scheme pays cash to women on delivering at health facilities, and aims at reducing maternal and neonatal mortality by promoting facility births.
According to the Ministry of Health report, all potential beneficiaries to the Safe Motherhood Scheme are enrolled on the Mother and Child Tracking System portal, “facilitating registration for Aadhar and opening/linking bank accounts to Aadhar for all potential Janani Suraksha Yojana beneficiaries that do not have the Aadhar number, entering Aadhar details and bank account numbers on the portal for regular reviewing and monitoring”. It is unclear whether linkage of Aadhaar is automatically applied across the board, or whether it is restricted to those patients declaring an interest in receiving the Safe Motherhood Benefit.
But the exchange of data for benefits offers disappointing results even for willing beneficiaries. While there is evidence to indicate that the integration of Mother and Child Tracking System and the maternity benefit has significantly increased healthcare facility births, there are numerous reports documenting the difficulties faced by beneficiaries in receiving payment.
As a scheme directly targeting pregnant women, any issues flowing from the Mother and Child Tracking System disproportionately affect women. While the system can lead to an improvement in women’s healthcare, it can also have an adverse impact on their sexual and reproductive health.
The fact that the system is integrated with Aadhaar means that those seeking abortion cannot undergo the procedure without leaving behind them a data trail - and one that relies on biometrics. The fact that a woman’s identity is connected to their healthcare information - including pregnancy termination - is problematic in a country where the stigma against abortion persists, and where data leaks are common. The integration of Aadhaar and the Mother and Child Tracking System becomes another obstacle in women’s access to abortion in India, and may create yet another incentive for women to turn away from health facilities and choose unsafe abortion providers instead. The consequences can be serious: a 2015 study published in the Lancet found that of all abortions undertaken in India, as many as 73% were done outside of health facilities.
The risk for women to be placed under surveillance on account of their reproductive choices is more than merely theoretical or accidental. In 2016, the Minister for Women and Child Development suggested the use of strict biometric-based monitoring to discourage gender-biased sex selection.
As argued by the Center for Internet and Society, the stigma is disproportionately placed on unmarried or disabled women, who experience the harms of visibility through centralised surveillance mechanisms more acutely than others by being penalised for their deviance from cultural expectations.
Data security risks
The Center for Internet and Society’s research highlights the challenges attaching to data entry and digitisation. Data for the Mother and Child Tracking System is collected manually at healthcare facilities. The data is then entered into the system by data entry operators who, based on that data, generate and distribute the system’s ‘work plans’ to health professionals.
Necessarily, the Mother and Child Tracking System creates both a paper and digital trail containing extremely sensitive information about patients. There is a considerably delay between manual collection of data and entry into the system, with some districts having an average time lag between primary data entry on paper and digitisation of that data of 72 days. Such delays not only call into question the effectiveness of the system, but also raise serious questions as to the safety of the data awaiting to be digitised, ranging from storage to access - as well as participating staff know-how and awareness of data protection obligations.
How may these risks be addressed?
The abovementioned risks could be mitigated by systemic changes to the Mother and Child Tracking System.
- Unlinking Aadhaar. There are clear health benefits to using incentives to encourage expecting mothers to attend healthcare facilities during pregnancy. However, it should be possible for pregnant women to avail themselves of any such schemes without going as far as linking Aadhaar to the Mother and Child Tracking System, as the risks may far outweigh the benefits. Alternatives to this effect should be explored and adopted.
- Staff training on data processing activities. Where an intricate data trail exists as in the case of the Mother and Child Tracking System, roles and responsibilities in the data processing sphere must be clearly stipulated and understood.
- Streamlining of digitisation processes. Connectivity and infrastructure challenges may make it difficult for Mother and Child Tracking System data to be processed digitally in its entirety. To ensure that the security risks attaching to the “transition” period are mitigated, steps should be taken to ensure prompt data entry and to create the technical and practical conditions to facilitate it.
- Nation-wide guidance on Mother and Child Tracking System data processing. Data protection risks at large may be addressed by way of nationwide guidance outlining the different risks.
Who is working on this
The Centre for Internet and Society is researching the digitisation of public services, and the use of big tech in the context of healthcare. The Centre calls for policy-makers to rethink the objectives and practices of data collection in public reproductive health provision in India. Rather than keeping the focus on meeting high-level targets, the Centre for Internet and Society calls for any health monitoring systems to enable local usage and protect the decisional autonomy of patients.
You can access Centre for Internet and Society’s report on the Mother and and Child Tracking System here.