Who is who?
Robust personal identification is an important part of service provision and patient tracking across the continuum of care. This is especially important in chronic care (such as TB or HIV) where drug adherence is necessary for successful treatment outcomes and curbing transmission. In the case of TB, tracking drug adherence is essential for preventing the emergence of drug resistant TB – a deadly problem in India.
Unique patient identification is also important to understand population coverage of services (number of people who access care) from facility-based data on footfalls.
However the process of identification and tracking remains a challenge in many low and middle-income contexts. Due to low literacy levels, inconsistent naming conventions, inconsistent transliteration of names, and limited civil registration, identifying details can be entered in a number of ways, leading to double counting. Additionally, dates of birth are often simply not known.
For example, my driver told me he was 26 when he started working for me three years ago, and again told me he was 26 when I asked this morning (to be fair, when asked, I often say I am 26). I checked his license and he is 28. He is lucky to have a drivers’ license, many people in India – as elsewhere – do not have any formal proof of identification. This makes it difficult to open a bank account, receive government benefits or get a ration card – entrenching the exclusion of the poor (of course, rich people have all the id they need). A picture of myself and my driver, both 26, is below.
Many forms of identification – such as ration cards – are only relevant in the issuing state, a challenge for internal labour migrants. One solution for this is biometric identification. Below, I review two applications of biometics in India, and one proposed application, to try and understand the benefits, potential benefits and the pitfalls of such a system. Biometrics for TB patients Biometric monitoring has achieved preliminary success with monitoring TB drug adherence at Operation ASHA. For patients with TB, taking a full course of medication on a strict schedule is vital for treatment success and preventing the emergence of drug resistant TB. A conservative estimate suggests there are 100,000 cases of drug resistant TB already in India – catastrophic for communities and the health system. The main method for TB drug delivery is ‘directly observed treatment’ (DOTS) – where a patient takes their scheduled dose in front of a health provider. While DOTS has revolutionized TB treatment all over the world, there are still problems. Adherence is always a challenge – due to forgetfulness, side effects, work schedules, and travel. For example, patients frequently get proxies to collect their dose. While providers keep paper records of doses taken, these are widely regarded as unreliable. Biometrics and a computer based system offers the possibility of better DOTS program management – whereby a program manager can see in real time where doses are missed and provide supervision or additional resources at such locations, and pay providers appropriate incentives for completed treatment. Such a system – called eCompliance – was introduced at Operation ASHA. A qualitative study assessing acceptability of eCompliance found that providers and counselors appreciated the biometric system, it forced patients to appear in person, increasing contact with providers, improving the quality of care. Patients were less clear how the system benefited them, although there was a sense of awe inspired by the laptops that encouraged clinic attendance, for example, “If laptop wouldn’t have been here I may not have come to the centre so regularly but would have sent my husband”. An impact assessment of eCompliance by the World Bank and the Poverty Lab is currently underway. This system has now been replicated in Uganda, which you can read about here. The Aadhar Card Biometric identification has already been introduced at the national level in India through the Aadhar card – a card available to every citizen with a number, eyeball and fingerprint details to ensure exact personal identification. This is designed to reduce corruption in the distribution of public benefits; benefits would go directly into bank accounts attached to the card. Proper distribution of benefits is important – we know many eligible women do not receive Janani Suraksha Yojana payments, and then money is lost in the distribution to fake beneficiaries. The Aadhar card has met resistance from privacy and civil liberties advocates, concerned about the potential for increased surveillance and the utility of the card – questioning what biometrics has to do with socio-economic status and eligibility for benefits (read more here). At the moment, the card is optional and uptake is uneven. Many of the anti-corruption benefits can only be realized if the card is universal, which would need to be mandated by law. There are also legitimate doubts about the government’s ability to keep the data confidential. The idea of the scheme is questioned in my friend Shubha’s beautiful short film This or That Particular Person. Biometrics for ARV adherence NACO is exploring biometric tracking for seasonal migrant labourers on ARVs, to decrease loss to follow up from destination worksite to home and back again. Smart cards for ARV adherence have also been trialed in South Africa by JSI’s Deliver project and in Malawi by the Rainbow Clinic. FHI 360 in India is also exploring its application in a longitudinal study of MSM counseling on HIV prevention. Ethical issues in biometrics As with any health records, the privacy of biometric patient information needs to be assured. People with HIV and TB routinely keep their status secret for the sake of keeping jobs and families intact. In the case of HIV, many patients also keep the lifestyles that exposed them to HIV secret (sex work, men who have sex with men, injecting drug use). If a repository of biometric details was breached, it would expose patients to stigma, and potential social catastrophe. These are not abstract concerns. When a biometric attendance system was piloted in a center for sex workers in Bangalore, some were hesitant to register because of concerns about privacy. In India, thumb prints are often used by people in financial transactions, leading to a concern about infringement into finances. You can read more about this here. There are greater risks of biometric data compared to paper based health records in relation to surveillance. Consider some of the high-risk populations for HIV – injecting drug users or hijras. In many contexts, injecting drug users frequently engage in criminal activity in order to sustain their habit. Hijras or the transgender community, barely have access to legal sources of livelihood in India. If the police knew there was a repository of finger-prints of crime suspects, they could subpoena it in criminal investigations – breaching the confidentiality of patients and putting the whole treatment program at risk (the ability to subpoena health records varies across different countries and states, but is allowed in India). So what? The promise of biometric identification is that it can create efficiencies and improve inclusion – leading to better managed programs and better health outcomes. However the case of patient monitoring also highlights the need for assured privacy and confidentiality. A legal infrastructure needs to be established to ensure data security, and provide accountability for any security breaches or data misuse. People will also need positive incentives to commit to, and participate in, such a scheme. If biometric data is used for surveillance, discipline and punishment this will lead to system non-compliance and poor quality data (health workers will allow the machine to break and then not get it fixed etc). Generally, like any data source, biometric data will need to be used in a non-punitive way to enhance program management. Further resources Biometric Monitoring as a Persuasive Technology: Ensuring Patients Visit Health Centers in India’s Slums Managing chronic disease is particularly challenging in the developing world, because every trip to a health center can translate to lost time and wages on the part of the patient. This problem is especially acute for tuberculosis patients, who in India are required to visit a center over 40 times in the course of a six-month treatment period. Identification for Development: The Biometrics Revolution Formal identification is a prerequisite for development in the modern world. The inability to authenticate oneself when interacting with the state—or with private entities such as banks—inhibits access to basic rights and services, including education, formal employment, financial services, voting, social transfers, and more. Unfortunately, underdocumentation is pervasive in the developing world. Civil registration systems are often absent or cover only a fraction of the population. In contrast, people in rich countries are almost all well identified from birth. This “identity gap” is increasingly recognized as not only a symptom of underdevelopment but as a factor that makes development more difficult and less inclusive. A Biometric Attendance Terminal and its Application to Health Programs in India Tracking attendance is a necessity in a variety of contexts in the developing world, encompassing health programs, schools, government offices, and a litany of other milieux. While electronic attendance tracking systems exist and perform their core function well, they are expensive, monolithic and offer little customizability. In this paper we describe a fingerprint-based biometric attendance system implemented using off-the-shelf components: a netbook computer, a commodity fingerprint reader, and a low-cost mobile phone. The system identifies visitors based only on their fingerprint, and uploads attendance logs to a central location via SMS. Its functionality goes beyond that of existing market offerings while improving modularity, extensibility, and cost of ownership. Integrated Medical Information and Disease Surveillance in Primary Health Care Centres in India The Government of Karnataka’s Integrated Medical Information and Disease Surveillance System (“IMIDSS”) aims to address all three issues of provider absence, leakages and poor epidemiological data by improving provider communication and accountability with technology. PHCs in five districts of the state were equipped with low-cost Multi-Functional Devices containing a computer processor, GPS system, camera, biometric capture (signature/thumb prints) and wireless transmission of data. The baseline data for this study has been collected and ongoing surveys are being conducted. Results are forthcoming.