Why we need to leverage data for healthy ageing

A computer screen showing four data-generated graphs

We need to create a practical, transparent, and ethical framework for data sharing. Image: Unsplash/Lukas Blazek

Fumiko Kudo
Project Strategy Lead, Centre for the Fourth Industrial Revolution, Japan, World Economic Forum
Yasunori Suzue
Fellow, C4IR, World Economic Forum, Japan
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The New Data Economy

  • By 2050, one in six people globally will be over 65.
  • The World Economic Forum’s new paper - Good Data: Data-sharing, public trust and willingness - proposes a fresh approach to data governance in the field of elderly care.
  • An approach that combines the skills of caregivers with the power of data can lead to better, more precisely tailored care for all elderly people.

The number of people over the age of 65 is growing rapidly around the world. In the United States alone, the Census Bureau estimates that around 10,000 people turn 65 every day. By 2050, one in six people globally will be over that line, a demographic shift that will create challenges for governments and medical-service providers. For example, the annual cost of dementia is expected to reach more than $1 trillion worldwide.

While the demand for elderly care is increasing, the number of caregivers is limited. One way to address that imbalance is to make better use of data. If we can promote the analysis and sharing of a range of elder care data, we can reduce the burden on caregivers.

Today, client information and operational know-how tends to be siloed by individual service providers, leading to inefficiency. And data is often vague and overly general. When authorities in Japan assess an elderly person’s care requirements, for instance, they use a simple five-level classification system that takes little account of individuals’ widely varying needs.

An alternative approach to data use is to prioritize evidence and efficacy. This would reduce mismatches between supply (caregivers’ capabilities) and demand (users’ needs) and improve outcomes for the elderly.

Improved use of data would help increase the financial sustainability and resilience of nursing homes as small businesses, while simultaneously helping elderly people. Here is one simple example from our research: an elderly woman overcame adjustment problems at her nursing home when she began styling and blow-drying other residents’ hair.

It turned out she had worked as a hairdresser when she was younger. The hairstyling solution emerged by chance—the woman’s job history wasn’t in the nursing home’s client database. In the absence of a systemic effort to make use of such connections, many opportunities like this are missed. An approach that combines the skills of caregivers with the power of data can lead to better, more precisely tailored care for all elderly people.

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Many barriers need to be overcome before we can make the most of data to improve the quality of elderly care. One of those barriers is the lack of a viable data-governance framework. The standard “notice & consent” model for data use does not work well for dementia patients. There are several gray areas: For example, in the absence of clear advance directives before cognitive impairment set it, who should give consent on behalf of the patient? Family members? Doctors and caregivers? Or should government authorities or local communities be involved?

Addressing the data challenge

The World Economic Forum’s new white paper, Good Data: Data-sharing, public trust and willingness, aims to provide a practical framework for addressing this challenge, emphasizing the importance of governance practices driven by data users, including care providers.

Specifically, this framework divides the data acquisition and management process into five phases and identifies where “expectation gaps” are likely to occur. Using a risk-based approach, the framework suggests 24 checkpoints for data users to reduce the gaps that lead to losses and breaks in public trust.

A framework of 24 checkpoints to boost public trust in shared data.
A framework of 24 checkpoints to boost public trust in shared data. Image: World Economic Forum

This framework can be used to improve data governance. The 24 checkpoints serve as the basis for codes of conduct, by supporting effective self-regulation and legal compliance by care providers. The framework emphasizes the importance of data governance throughout the data chain, from systems planning to downstream data processing. Due consideration is given to privacy rights as well as other important values such as equality.

Image: World Economic Forum

A balanced, rules-based approach is crucial. Sharing and pooling data creates opportunities to increase efficiency and improve outcomes. But without proper protocols and governance, the same practices can result in dystopian outcomes. Use of elderly care data by companies, governments, and others must go hand-in-hand with protection of the rights of individuals.

We envision – and have provided a framework for – users of elderly care data taking the initiative in building transparent protocols and governance systems, and having those systems audited by third parties. Building consensus among a range of stakeholders in order to further improve governance will be the next challenge.

Another challenge is to create appropriate incentive mechanisms for users to invest in data utilization. A holistic approach to these challenges is being developed by the World Economic Forum-led Data for Common Purpose Initiative, which strives to achieve the fair, ethical, and responsible use of data through a multi-stakeholder process.

Many organizations are focusing on data protection and privacy considerations. But the key to eliminating mistrust in data use, and to fully leveraging the value of data, remains elusive. We need to create a practical, transparent, and ethical framework for data sharing that can be tested and improved based on real-world use.

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