Responsible Data Sharing in Health and Healthcare

Against the backdrop of the pandemic and the unprecedented sharing of data and information on all COVID-19 related matters, the Society held six roundtable sessions with more than 30 experts representing different countries and professional groups to hear their views, insights and advice on the topic of responsible data sharing in health and healthcare.

The insights and advice gleaned from the roundtables are succinctly captured in this whitepaper. It 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.

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.

The steps outlined in this White Paper – such as establishing a framework for data sharing and setting up a national digital health agency – are some of the practical actions that stakeholders can take to progress towards a more progressive and responsible data sharing ecosystem for health and healthcare data. Moving forward, there are several guiding principles and key considerations for stakeholders to keep in mind when implementing these recommendations in order to foster cross-border data sharing that is premised on the values of equity, trust and public good.

1. Data sharing is a means to an end
2. Build trust and safeguard the public’s interest
3. Ensure that everyone at the table has a stake in the success of the ecosystem
4. Take action