National University of Singapore
Precision Public Health — Asia society
Dr Clive Tan; Ms Nikita Kanumoory Mandyam; Ms Immanuela Asa Rahadini; Ms Jacqueline Yap
June 2022
Edited by
Joaquim Cardoso
Health Management – Foundation
Digital Health – Institute
Data Health – Unit
June 22, 2022
PREFACE
The rich sharing and discussions on the topic of data sharing in the health sector during the Precision Public Health Asia Conference 2021 encouraged us to further explore this matter.
Against the backdrop of the pandemic and the unprecedented sharing of data and information on all COVID-19 related matters, we held six roundtable sessions with more than 30 experts representing different countries and professional groups to hear their views, insights and advice on this topic.
Across the world, the healthcare sector is facing the common challenges of an ageing population, increased healthcare needs and rising healthcare expenditure.
In this setting, the growing prevalence of digital health is a key development that has the potential to disrupt the way governments, payers, providers and communities think about health and healthcare.
Governments, ministries of health and international organisations recognise this trend and acknowledge that “digital health is here to stay”.
In the 2018 World Health Assembly, Member States voted to adopt the resolution on Digital Health.
In 2021, WHO published a Global Strategy on Digital Health, the Asian Development Bank launched a Digital Health Implementation Guide for the Pacific and the World Bank published its Digital Health Assessment Toolkit Guide.
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 insights and advice gleaned from the roundtables are succinctly captured in this White Paper on Responsible Data Sharing in Health and Healthcare.
This White Paper provides useful and practical steps for readers who are working towards a more progressive future where health data are shared more openly, in a safe and responsible manner and in a way that value-adds to health systems around the world.
Similar to how the roundtable sessions brought together stakeholders from different backgrounds — including policy makers, healthcare providers, technical experts in data sharing and technology systems, pharmaceutical companies, medical device manufacturers, researchers, academics, insurers and payers — we hope that this report will provide a useful starting point for conversations amongst stakeholders and serve as a scaffold for us to build a better future together.
Dr Clive Tan
On behalf of the teams at the Precision Public Health Asia Society and the Saw Swee Hock School of Public Health, National University of Singapore
2022
Executive summary
Investments and spending in health and healthcare in Asia have grown.
As healthcare becomes increasingly digital, countries and organisations have in their hands an increasing amount of health data.
Sharing and integrating multiple data points can unravel unique insights that can improve population health.
Three key factors influence whether countries can build a robust health and healthcare data sharing ecosystem:
· i. the country’s level of familiarity with managing data, data sharing arrangements and data sharing technology;
· ii. the prevalence of the use of electronic medical records systems by healthcare providers and stakeholders in the healthcare ecosystem and
· iii. the presence of a national-level body that is responsible for the development of the health and healthcare data sharing ecosystem.
To progressively build up the capabilities that are required to create a seamless data sharing ecosystem, a data sharing framework needs to be devised first.
Establishing a data sharing framework must be a joint effort involving multiple stakeholders and collaborative dialogue among governments, the private sector, academia and the public.
Such a framework would comprise of several key building blocks:
· (i) data sharing strategy,
· (ii) technical and technological capacity,
· (iii) regulatory and legal capacity and
· (iv) an approach to operationalising data sharing.
To build technical and technological capacity and to enable stakeholders to share health and healthcare data responsibly and safely, there must be an agreed way to classify and tier data into different categories.
Within each category, there should be different sensitivity tiers for certain data fields. These tiers would then inform the optimal data sharing strategy — whether the data can be shared more openly or in a more restricted and controlled manner.
When deciding how to share data, it is useful to identify the roles of different stakeholders in the data sharing ecosystem:
· (i) data generators,
· (ii) data users,
· (iii) data ecosystem regulator and governing agency and
· (iv) data exchange platform and IT service provider.
Understanding the roles, needs and responsibilities of the stakeholders in the system is an important starting point for conversations, and for building different levels of control and access to the data.
For those starting out on this data sharing journey, it is important to start small, be conscious about the need to build trust and confidence and collaborate with natural partners first.
Meaningful data sharing can only take place in a trusted environment where there are clear measures to safeguard the confidentiality, integrity and availability of information.
The key components of trust-building start with transparency of processes and common rules on how data are shared, used, managed and protected.
Trusted data sharing for health and healthcare data must be built on the understanding that there is consent given for secondary uses of these datasets.
In each trusted environment and data sharing ecosystem, the data ecosystem regulator and governing entity that is responsible for maintaining the integrity of data and managing its authorised use must show that it prioritises the public’s interest.
This agency must also have strong, clear and timely communication with members of the public on news and updates about the data sharing ecosystem, especially when it comes to dealing with negative events such as data leaks or cybersecurity incidents.
When the capabilities mentioned above have been set up, we can then effectively harness the value of shared data at three levels:
· (i) individuals, families and communities;
· (ii) companies and healthcare providers and
· (iii) governments and regulators.
Data sharing is a means to an end, and we must not forget to harness the value of our efforts and investments in this endeavour.
Now, let us prepare the grounds for responsible data sharing and sow the seeds for a better future.
Selected images
Roles in a health data ecosystem
Structure of the report (long version)
· Preface
· Executive Summary
· Current State of Data Sharing in Health and Healthcare in Asia
· A Framework for Trusted and Responsible Data Sharing
· Data Classification and Tiering
· Data Sharing Arrangements — How to Share Data?
· Building Trust to Enable Data Sharing
· Encouraging the Use of Shared Data to Draw Out the Value of Data
· Conclusion: A Way Forward
About the authors
Dr Clive Tan
Founding Member, Precision Public Health Asia Society
Adjunct Faculty, Saw Swee Hock School of Public
Health, National University of Singapore
Ms Nikita Kanumoory Mandyam
Research Assistant, Saw Swee Hock School of Public
Health, National University of Singapore
Ms Immanuela Asa Rahadini
Research Intern, Saw Swee Hock School of Public
Health, National University of Singapore
Ms Jacqueline Yap
Research Intern, Saw Swee Hock School of Public
Health, National University of Singapore
Originally published at https://pphasia.com
