Why we need to harness data to age healthy

  • By 2050, one in six people in the world will be over 65.
  • The World Economic Forum’s new document – Good Data: Data Sharing, Public Trust and Will – proposes a new approach to data governance in elderly care.
  • An approach that combines the skills of caregivers with the power of data can lead to better and more precisely tailored care for all older people.

The number of people over 65 is growing rapidly around the world. In the United States alone, the Census Bureau estimates that approximately 10,000 people turn 65 every day. By 2050, one in six people in the world will have exceeded this limit, a demographic shift that will create challenges for governments and healthcare providers. For example, the annual cost of dementia is expected to reach over $ 1,000 billion worldwide.

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

Today, customer information and operational know-how tend to be siled by individual service providers, leading to inefficiency. And the data is often vague and too general. When Japanese authorities assess the care needs of an elderly person, for example, they use a simple five-level classification system that takes little account of the wide variety of needs of individuals.

An alternative approach to using data is to prioritize evidence and effectiveness. This would reduce the mismatches between supply (caregiver capacities) and demand (user needs) and improve outcomes for older people.

Better use of data would help increase the financial viability and resilience of nursing homes as small businesses, while simultaneously helping the elderly. Here’s a simple example from our research: An elderly woman overcame adjustment issues in her nursing home when she began styling and drying the hair of other residents.

It turned out that she had worked as a hairdresser when she was younger. The hairdressing solution came about by chance: the woman’s work history was not in the database of the nursing home’s clients. In the absence of a systemic effort to utilize 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 and more precisely tailored care for all older people.

There are many obstacles that must be overcome before making the most of the data to improve the quality of care for the elderly. One of these obstacles is the lack of a viable data governance framework. The standard “notice and consent” model for data use does not work well for patients with dementia. There are several gray areas: For example, in the absence of clear advance directives before cognitive impairment sets them in, who must give consent on behalf of the patient? Family members? Doctors and caregivers? Or should government authorities or local communities be involved?

Meeting the data challenge

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

Specifically, this framework divides the process of acquiring and managing data into five phases and identifies where “discrepancies” are likely to occur. Using a risk-based approach, the framework offers 24 checkpoints for data users to narrow the gaps that lead to losses and disruptions in public trust.

A framework of 24 checkpoints to build public confidence in shared data.

A framework of 24 checkpoints to build public confidence 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, supporting effective self-regulation and compliance with the law by health care providers. The framework emphasizes the importance of data governance throughout the data chain, from systems planning to downstream data processing. Special attention is paid to privacy rights as well as other important values ​​such as equality.

Image: World Economic Forum

A balanced and rules-based approach is crucial. Sharing and pooling data creates opportunities to increase efficiency and improve results. But without proper protocols and governance, the same practices can lead to dystopian results. The use of elderly care data by businesses, governments and others must go hand in hand with the protection of individual rights.

We envision – and have provided a framework for – that users of elderly care data take the initiative to create transparent protocols and governance systems, and have these systems audited by third parties. Building consensus among a range of stakeholders to further improve governance will be the next challenge.

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

Many organizations focus on data protection and privacy considerations. But the key to eliminating mistrust in the use of data and realizing the full value of data remains elusive. We need to create a practical, transparent and ethical framework for sharing data that can be tested and improved on the basis of actual use.

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