The Importance of Health Data Governance in the AI Era: Indonesia Must Promptly Establish Integrated Healthcare Services
As artificial intelligence (AI) advances in the healthcare world, robust health data governance becomes increasingly crucial. High-quality, well-managed data will help train AI models to analyze datasets, capture patterns, and make predictions, ultimately generating reliable and relevant clinical information.
In today's digital era, the availability of health data is rapidly increasing. This information must be managed appropriately to ensure its benefits are shared collectively.
Strengthening health data governance is beneficial for improving public access to healthcare services effectively and efficiently. Health data governance will serve as the foundation for individual healthcare, foster medical innovation, and most importantly, enhance patient trust.
Imagine being rushed to a hospital unexpectedly. Within seconds, doctors can access your complete health history, from allergy records to your latest health test results. The doctor can then recommend the most appropriate therapy for your condition.
This isn't a scene from a science fiction movie, but a glimpse into the future of Indonesian healthcare when robust health data governance is in place.
The Importance of Health Data Governance in the AI Era
There are at least three reasons why Indonesia needs to promptly establish integrated health data governance in the age of artificial intelligence.
First, to ensure quality standards for health data collection, validation, and maintenance. Second, to protect patient privacy and guarantee ethical data use. Third, to support the comprehensive integration of various data types for AI models.
Health data governance also plays a crucial role in addressing potential biases in AI. Through careful planning and collection of health data, errors in data can be identified and minimized.
Data standardization is also necessary, for example, through the use of integrated applications that will facilitate information sharing between healthcare providers, researchers, and policymakers. This, in turn, will improve operational efficiency and encourage patient engagement.
Conversely, poor health data governance risks serious threats. The most apparent threat is an increased risk of data breaches, incidents where unauthorized parties steal confidential information, such as personal identities, potentially eroding public trust. Fragmented patient data that is difficult to access can also hinder effective care, cause delays, and potentially endanger patient safety.
Furthermore, weak data governance can impede research and innovation in healthcare.
In crisis situations, unreliable data will severely hamper response efforts, as seen in the early phases of the COVID-19 pandemic.
Regulatory violations due to poor data governance can also bring legal risks to healthcare facilities and cause financial losses.
Learning from Other Countries
Indonesia can learn from the success of various countries that have implemented good health data governance. The European Health Data Space, for instance, emphasizes the importance of harmonious cross-border data sharing rules. These rules aim to empower individuals by giving them control over their health data, facilitating healthcare services, and enabling the reuse of health data for research and policy-making. This initiative supports the creation of a secure, trustworthy system that aligns with regulations.
Meanwhile, Health Data Research UK provides a framework that allows researchers to use patient health data for research while protecting patient data privacy.
In the United States, the Health Insurance Portability and Accountability Act (HIPAA) provides rules that can protect patient health data privacy while allowing the data to be used for public good.
Estonia's e-Health and Finland's Secondary Use of Health Data have established data governance that prioritizes transparency, interoperability, and security in health data management.
Estonia supports patients in controlling their data through a centralized blockchain-based system. Finland allows the use of secondary data for research and government policy. Both countries ensure efficiency and privacy protection in compliance with European privacy legislation, The General Data Protection Regulation (GDPR). These countries demonstrate that strong data governance can improve healthcare services, personalization, and data-driven innovation.
So, what about Indonesia?
Challenges in Indonesia
Indonesia faces unique challenges in implementing health data governance. This is because the country has a large and diverse population and varied natural conditions.
Therefore, a comprehensive framework is needed to build robust health data governance. This includes establishing clear roles in data collection, data quality standards, data sharing regulations, patient privacy protection, health ethics guidelines, patient engagement mechanisms, and audit and quality assurance processes.
Law Number 27 of 2022 on Personal Data Protection (PDP Law) provides the legal framework. More specific guidelines regarding data management and exchange in health facilities, especially those under the coordination of the Ministry of Health (Kemenkes), are outlined in Government Regulation Number 28 of 2024.
Government Regulation No. 28 of 2024 can be strengthened by adding detailed protocols on handling data breach cases and establishing detailed criteria for cross-border and regional data transfers. The regulations also need to be aligned with international standards.
These regulations need to include specific guidelines on handling new technologies such as AI, cloud computing, big data, cybersecurity, including strong oversight mechanisms to prevent data breaches.
SATUSEHAT official website
The development of integrated data applications, such as Satu Data Indonesia and SATUSEHAT, must be pursued together by involving all stakeholders. Investment in technical infrastructure is also crucial, including the development of integrated health information systems and secure data exchange platforms.
Given the large number of regions in Indonesia, the provision of supporting facilities, such as internet access, may need to be done gradually, starting from urban areas.
Equally important is individual empowerment. Humans are the most vulnerable point in many cybersecurity cases, such as health data leaks. Therefore, data management and digital literacy training are necessary, especially in developing skills in AI and cybersecurity. The government can also partner with international organizations to enrich insights and gain support.
For the data governance strategy to succeed, the government must build public trust, both from the community and corporations. This can be done by educating the public about the benefits of data sharing and transparency in data use. Additionally, the government must devise appropriate strategies for corporations to ensure compliance with regulations does not add significant costs that could hinder innovation.
However, it should be remembered that the above steps must be supported by strong resources and strategic collaborations to avoid getting trapped in repetitive and ineffective development, which could actually hinder the acceleration of innovation and application of existing technologies.
Involve Many Parties
To realize the revolution in healthcare services and health data governance structures in Indonesia, it is necessary to establish a national health data authority and governance committee. This institution will help manage the data sharing system effectively.
Moreover, Indonesia must also have a concrete and measurable implementation roadmap. The first stage could begin with pilot projects in major cities, followed by evaluation and system improvement before national implementation.
It is important to involve local health startups that have the potential to provide innovative solutions with cost-effective management. For example, private companies developing telemedicine applications or cloud-based health data management systems. This collaboration is very strategic to accelerate responsible and sustainable digital health transformation.
This has actually begun with the formation of the Ministry of Health's Regulatory Sandbox since April 2023. The Regulatory Sandbox is a digital health innovation development program by the Ministry of Health to assess the management capabilities of a business unit. The governance flow of health data use in Indonesia will involve multiple ministries. Therefore, the Regulatory Sandbox needs to be expanded by adding participants from other relevant ministries, such as the Ministry of Communication and Information and the Ministry of Home Affairs and Foreign Affairs.
Furthermore, health data governance needs to be integrated with broader priority health issues in society, for example, for better governance of tuberculosis management. This system could be key in realizing equitable healthcare services in remote areas through telemedicine and efficient data exchange.
The road ahead may be full of challenges, but this effort is crucial to unlock the potential for comprehensive digital health transformation in Indonesia. With a joint commitment from the government, private sector, and society, Indonesia can build a strong, secure health data governance system that benefits both public and individual health.
This article was authored by Dr. Arif Perdana, Associate Professor in Data Science, and Dr. Grace Wangge, Associate Professor in Public Health. It has been published in the Indonesia version on TheConversation.com.