The participants smile for a photo at the end of the regional consultation hosted via Zoom

On April 19, 2024, the Asia eHealth Information Network (AeHIN) conducted a regional consultation on the draft model law on Health Data Governance (HDG) via Zoom, where 33 high-level stakeholders from India, Nepal, Malaysia, Maldives, the Philippines, Sri Lanka, and Thailand representing various sectors participated.

AeHIN has continuously collaborated with the Transform Health Coalition to advocate for the HDG principles across the South and South-East Asia region since 2022. In early 2024, the Transform Health Coalition drafted a model law for HDG and launched a public consultation to obtain feedback from multiple stakeholders.

The model law is flexible and non-prescriptive, allowing countries to adapt it in their respective legal systems to help strengthen national laws, regulations, and frameworks on HDG. It aims to:

  • Solicit stakeholder and expert input including feedback on the content and how it is framed
  • Strengthen and validate the draft through government and non-governmental stakeholder inputs by addressing any gaps
  • Build consensus and alignment on the draft model law across countries and stakeholder groups
  • Galvanize political will and support for the model law, and
  • Facilitate an inclusive approach to the development of the draft model law on HDG, containing core elements and legal guidance text by gathering input and perspectives from a diverse set of stakeholders

In the regional consultation facilitated by AeHIN, the participants highlighted key points crucial to adopting and adapting the model law in countries.

Decision makers, including the various ministries and relevant technical working groups, need to review the model law. A comprehensive review of the existing laws or regulations in countries would help ensure that the proposed model law is aligned with the existing legal structures and governance mechanisms to ascertain the need for updates or revisions.

Data quality, integrity, and security need to be taken into account in the model law, including ensuring accuracy, reliability, and consistency of health data throughout its lifecycle (i.e., validation, cleaning, maintenance, error prevention, etc.).

Standards for data storage and security should be considered in the model law. There is also a need to have data standards and cross-border data sharing, possibly through bilateral or multilateral agreements, to be considered by countries interested in adapting the model law.

The model law should not only cover electronic health data, as paper-based health records are still prevalent and widely used in many countries. Written data should be considered in the model law to ensure inclusivity.

In addition, non-health data, which can potentially be collected to inform health or patient care, would also require governance. The terms used in the documents should be precise, clearly explained, and with no ambiguity.

The participants agreed that the draft model law is a good reference that can guide countries to adopt HDG principles more effectively, whether adapting to the existing data protection act or data sharing act/regulations in the country or developing a new regulation/law for HDG.

The regional consultation was held via Zoom and supplemented by written feedback from stakeholders who could not participate in the synchronous discussion. The AeHIN Working Council members who facilitated the invitation of relevant high-level stakeholders played a pivotal role in convening the stakeholders, which were composed of senior ministry officials and professionals from health informatics, law, academia, and information technology.

The participants’ active participation and sharing of invaluable experiences and feedback made the regional consultation highly interactive. Consistent engagement with countries proved crucial for advocating HDG principles and HDG model law.