Luke Slawomirski, Health Economist, Organization for Economic Cooperation and Development
On 21 November 2019, Health Ministers and high-level officials from OECD countries will convene in Denmark to discuss ‘Health in the 21st Century: Data, Policy and Digital Technology.’
They will discuss how to best deploy digital technology—and its lifeblood: data—to advance the health of individuals and populations. Part of their deliberations will focus on how to foster trust and co-operation within and across countries to bring forth this important agenda.
But, why are ‘soft’ elements like trust important in an area that is principally about technology and science? Moreover, why is it a concern for political leaders and policymakers?
Health Systems are Foregoing an Opportunity to Expand Knowledge
Modern health systems are awash with data. These data have a range of principal uses ranging from clinical to administrative. However, because digital information can be shared at minimal marginal cost, these data can be re-deployed towards other important purposes such as research or public health interventions.
"While the industry, academia, and civil society all play a very important part, trust must be fostered through dialogue and agreement at the highest levels"
However, in stark contrast to other industries, health systems rarely put their data to work in this way. Indeed, only a minority of OECD countries regularly link available datasets for research. The consequence is that in many countries, it is hard to detect whether healthcare treatments and services produce a good outcome for patients or a poor one, such as deaths, readmissions to hospital, inappropriate prescriptions, or gaps in needed care. It is also very difficult to use real world data to advance medical science and provide new treatments and better services.
Failure to use data to generate new knowledge is a lost opportunity. However, the key challenges—which include (legitimate) concerns over privacy and a lack of common data exchange standards—cannot be solved by technology. They require trust and co-operation among stakeholders.
Trust through Good Governance
Personal health data are very sensitive, which means trust is critical in enabling their use. Patients and the public must be confident that their data are secure and protected and, if re-used, that this serves purposes that are in accordance with their values and preferences. Most people are positively disposed to use of their personal data for purposes that are in the public interest but reservations about certain uses of data are also evident.
Digital technology companies, for example, are increasingly active in health. They are not only in possession of massive amounts of data but also have the means to derive knowledge from them. This has the potential to yield advancements for health and medical care. However, experience suggests that the public is very sensitive to their personal health data being shared with commercial organisations, even if the stated aims are benevolent. Resolving this tension will open new possibilities, but will require a lot of work and leadership from governments, industry leaders, and all other stakeholders.
Trust is also a critical element within the health sector. Data custodians must trust each other and the agencies and organisations tasked with managing, aggregating, and analysing their data. Provider organisations will be reluctant to share their data with other entities if they have mistrust in its security or in whether its used for agreed purposes.
Trust is earned patiently and incrementally. Good governance can go a long way to build and maintain it. In addition to the right legal and policy settings, and consent and cyber security, good governance includes an open and sustained dialogue with stakeholders. It also requires being transparent about how data are used or how the decisions about their use are made. Most negative experiences in this area can be primarily attributed to failure on one these fronts.
Co-Operation to Encourage Common Standards
The world-wide-web would never have become the transformative and invaluable resource it is without agreement on a common data protocol.
Decades on, the health sector is facing a similar situation. Common data standards and exchange formats to make national and international analyses and research far less complex and costly. This is important across various agencies, regions, and institutions responsible for creating, managing and using data within a country. It is also increasingly important on the international stage, because 21st century health challenges such as finding an effective treatment for dementia, for example, can only be overcome with knowledge derived from very large datasets. This can only be achieved by pooling data from multiple countries and jurisdictions over years and decades.
While several noteworthy cross-border projects and interoperable data systems can be found, the health sector lags far behind other industries such as banking, transportation, and telecommunications in putting the wealth of data at disposal to work.
Without co-operation, common rules cannot be established and agreed. Co-operation is, in turn, reliant on trust. Without trust, parties and participants are unlikely to act in good faith and progress will be hard.
Leadership to Advance this Agenda
This is a new public policy frontier with many uncertainties and unknowns. This naturally creates anxiety, fear, or simply inertia, which block the efforts for a sensible and coordinated approach to get the most from digital technology and data.
Trust and co-operation plays a key role, but they are heavily reliant on political leadership. While the industry, academia, and civil society all play a very important part, trust must be fostered through dialogue and agreement at the highest levels. Events such as the one in Copenhagen next month play an important part in this regard, but ongoing efforts will be required to fully realise the promises of the digital transformation in health.