The importance of identifiers
Legal identification for all by 2030, is a strategic goal by the
UN Sustainable Development Goals (SDG 16.9). Legal identity is not only critical in accessing services and welfare benefits, but also a fundamental right. By 2021, approximately
95 percent of the Indian citizens had registered Aadhaar cards, making it the world's largest identity project. The Government of India recently launched the Ayushman Bharat Health Account (ABHA), a unique health identifier for citizens with the provision to link one’s personal health records. The concept of a unique health ID isn’t unique to India; it has been implemented in countries like Australia, Taiwan, Thailand, South Korea, and Kenya, to name a few. The idea of a family health ID, however, is novel and still evolving, with only a few countries engaging in it.
The Government of India recently launched the Ayushman Bharat Health Account (ABHA), a unique health identifier for citizens with the provision to link one’s personal health records.
Historically, programmes have faced challenges of targeted transfers to the right beneficiaries linked to families/communities. Due to the lack of a system for authentication and verification, a common challenge has been either exclusion or duplication of beneficiaries from welfare schemes. There have been cases of service capture where beneficiaries from the same family have availed services using different IDs, causing someone else to be excluded. This has severe repercussions on the overall welfare and development of the society. A universal family ID, backed by a strong data and privacy framework, can streamline beneficiary identification, enable data symmetry, verification and interoperability, to deliver services effectively.
A few Indian states are exploring the concept of family ID.
Kutumba, a family-identifier based entitlement management system was launched by the Government of Karnataka. Similarly, the Haryana government launched the
Parivar Pehchan Patra, a family identifier in 2019 with the objective of creating authentic, verified, and reliable databases for all families in Haryana. These examples of family IDs are from a service delivery perspective. However, from a public health standpoint, a family ID necessitates a more nuanced understanding as it has broader consequences. For example, information on social, financial, and health history would be crucial in determining family eligibility and coverage under the Pradhan Mantri Jan Arogya Yojana (PM-JAY). As a result, having a universal family ID that captures the most essential information would be a game-changer for government initiatives.
Health at the core of a family ID
Family is the most important social institution for the development of an individual, for they nurture individuals either through association or birth, and share common resources for growth and development of its members. Family level influence on one’s health is derived from
three main sources namely, genetics, shared physical environment, and social environment. As a result, it is crucial to capture family level details that have implications on an individual's health in the family ID. For instance, depending on family history, the chances of an individual being vulnerable to certain hereditary chronic diseases like diabetes and high blood pressure can be easily detected.
The REGNO number was first used in 1966 as a voluntary insurance registry for a family, but it was revised to be a default registration as soon as a family became a member of the ward.
The concept of family ID, specifically for health, is already being experimented in many countries in different manners. In the United States (US), the US Health Information Knowledgebase maintains a
unique Family Health ID Number, which is linked with each family member's unique identifier. This family identifier is used mainly for storing the families' data on prescription drugs, generated through electronic prescriptions. On the other hand, the Canadian province of Manitoba, has implemented
Manitoba Health Insurance Registry for streamlining health insurance service delivery, using a family identifier, referred to as REGNO (Registration Number). The REGNO number was first used in 1966 as a voluntary insurance registry for a family, but it was revised to be a default registration as soon as a family became a member of the ward. In addition to the self-reported updates to the registry, Manitoba health uses other methods to update the Manitoba Health Insurance Registry such as data on vital statistics (birth and death), municipal audits, and population reports. The Manitoba system is supported by a strong data protection framework that de-identifies individual data. It uses codes and patterns to encrypt resident details, but also allows for agency to define individual- level associations over time.
Family ID offers immense potential in providing a holistic healthcare experience for an individual, apart from streamlined services. For instance, designing preventive interventions for families and family members who are at risk of communicable diseases such as kala azar, TB, hepatitis, etc. This is especially important in pandemics like COVID-19, where vulnerable groups (those at risk of heart diseases, diabetes, etc.) can be detected using aggregated family-level health data.
Considerations for designing family ID
A family ID based on health could be complex and necessitates robust accountability measures. As the thrust for digital governance picks momentum, there is a massive opportunity for the policymakers to think around some fundamental considerations and design an inclusive, ethical system.
Established definition of a family
Marriage, parent-child relationship, adoption, and other legally recognised relationships form the foundation for a family unit. The government, however, uses multiple definitions for various purposes. Under
Kutumba scheme, the Karnataka government has left the definition of the family up to the residents, with a set of defined minimum criteria and the conditions for enrolment. Similarly, the
Public Distribution System (PDS), considers a family based on
Census India’s definition of a ‘household’. In the absence of an established definition of a family, there are discrepancies across programmes in identifying a family. When it comes to health specifically, it is crucial that the definition of a family encompasses all kinds of relationships and dynamically captures changing relationships based on migration of individuals across families, split of a family unit, loss of a member due to death, etc.
As the thrust for digital governance picks momentum, there is a massive opportunity for the policymakers to think around some fundamental considerations and design an inclusive, ethical system.
Data laws and privacy
Countries like the US and Europe have enacted rules and regulations to protect digital health data privacy, such as
HIPAA and
EU Data Protection Regulation, respectively, that outlines policies and processes for protecting personal data, including electronic health data. India has bills like the Personal Data Protection 2019 and Digital Information Security in Healthcare Act, 2018, but these have not been legally passed yet. Before venturing into large scale identification drives, a robust data protection legal and regulatory framework is non-negotiable. This framework needs to emphasise rules for aggregation and sharing of data, storing and security of databases, individual consent and control mechanisms, de-identification and anonymisation rules. In the absence of a comprehensive data protection regime, the threat of privacy breaches and data misuse can reduce confidence, jeopardise an individual's sovereignty and place vulnerable populations at risk.
Opportunities and Recommendations
- Linking of the family ID with individual health IDs: It is critical to link an individual family member's health ID (ABHA) with the family ID to capture a family's health information. The connection of these digital IDs would aid in identifying family members, their relationship tree, and the family's aggregated health history.
- Creating a consent framework: Family ID relies on informed data sharing and visibility, but it requires a strong consent framework that prioritises personal data protection. The Health Data Management Policy, recommends a consent structure that secures the data principal’s right to not share data at any given time, but that it needs a legal backing to be accountable. For the family ID, a consent framework with the backing of strong data protection laws is critical to protect against privacy breach and misuse of data. It is recommended that only minimum data with purpose limitation (for pre-listed hereditary diseases) be captured vis-á-vis an individual’s entire health history. Furthermore, to maintain anonymity, the family health data should be aggregated and de-identified. However, the design of one-time consent versus consent given every time needs to be weighed against the pros and cons.
- Ensuring provision to track family health history: According to the Centers for Disease Control and Prevention (CDC), family health history is a record of health conditions in one’s family. By observing patterns of illness amongst relatives, healthcare practitioners can identify whether an individual, family members, or future generations are at a higher risk of a particular condition. A family health record can be linked to the family ID. This family health record would capture aggregated data against some pre-identified genetic disorders of family members for identifying vulnerabilities such as type 2 diabetes, cancer, etc., and carry out preventive care. Data and privacy concerns, especially for data exchange between family members, must be addressed in a well-defined manner.
- Establishing accountability and responsibility: The family ID would capture data across programmes. It is crucial to establish who would be the data fiduciary within the government. Even though the family ID would be overarching across sectors, it is important to identify which ministry would be the primary custodian of the data. It is recommended that if the family ID is built with health at its core, the Ministry of Health should be the primary custodian of information.
Conclusion
The pandemic has shown that digital health solutions can increase service quality and accessibility. While digital may not be the solution to all challenges, a well-designed, ethical governance framework can compound the benefits of healthcare interventions, thereby, revolutionising the system. The idea of a family ID card isn't new, but with the desire for integrated digital missions, India is in a position to lead the way for a more holistic, ethical system.
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