Abstract
Digital services generate an enormous amount of healthcare data. Indeed, “data is the new oil” but how can we harness the value of health and healthcare data. The National University of Singapore and the Precision Public Health Asia Society Asia conducted a series of roundtable sessions with more than thirty experts from the Asia-Pacific region in 2021 and published in 2022 the White Paper on Responsible Data Sharing in Health and Healthcare. In addition to providing analysis and recommendations for good practices for data sharing in the health sector, it established a Data Sharing Ecosystem (DASHECO) Framework where it simplified the system to four key stakeholders: Health Data Generators, Health Data Users, Health Data Exchange Platform & IT Service Provider, and Health Data Regulator & Governing Entity. Clarity on these roles that stakeholders play in the ecosystem has been helpful in facilitating conversations and managing expectations during the process of setting up these data sharing ecosystems. A key distinction that the DASHECO Framework puts forth are the term “Health Data Generators” and “Health Data Users”. It is premised on situations where the rights and responsibilities of safeguarding and managing the data are shared across several stakeholders, the term ‘data owner’ becomes less relevant, and it is more progressive to see the stakeholders who hold these data as ‘data stewards’, with certain rights and responsibilities associated with the privilege of access to these data.
In 2022 and 2023, the Singapore Ministry of Health conducted extensive stakeholder consultations for its Health Information Bill, which will be tabled to Parliament in early 2024. The Health Information Bill will state the conditions for the proper collection, use and sharing of patient information across different healthcare providers and care settings in a safe and secure manner. It will enhance the legal framework for data sharing across the healthcare ecosystem and with selected community partners improve care coordination by care providers. It will also put in place clear rules and requirements for data sharing, while ensuring safeguards for data sharing to protect patient confidentiality and respect patient autonomy. The DASHECO Framework in the White Paper on Responsible Data Sharing in Health and Healthcare was discussed and included in the stakeholder consultations.
Policy analysis of the data sharing aspects of Health Information Bill using the DASHECO Framework was conducted to (1) assess alignment of roles and responsibilities of the key stakeholder groups, and (2) forecast any challenges in its implementation phase using a realist evaluation approach. The passing of the Health Information Bill is a big step forward for Singapore’s health sector. We expect that the implementation and system changes will unfold over the next five years, and will include a range of stakeholders engagement to provide long-lasting and sustainable change for the system and stakeholders.