Fumiko Kudo
Project Strategy Lead, World Economic Forum, C4IR Japan
Yasunori Suzue
Fellow, World Economic Forum, C4IR Japan
If we leverage the power of data, we can create precision care services that meet the diverse needs of the elderly while reducing the burden on caregivers.
When it comes to managing dementia patients’ data, the traditional “notice and consent” model doesn’t work. Data governance is key to improving elderly care management. The number of people over the age of 65 is growing rapidly. 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 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.
While 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.
The importance of data
Improved use of data would help both nursing-care providers and the elderly. It would reduce gaps between supply and demand—a “big-picture” benefit for society—and make a difference in individual lives.
One simple example, an elderly woman overcame adjustment problems at her nursing home when she began styling other residents’ hair. It turned out she had worked as a hairdresser when she was younger. The hairstyling solution emerged by chance, but how many similar opportunities are missed? An approach that combines the caregivers’ skills with the power of data can lead to better, more precisely tailored care.
The challenges we need to face
Many barriers still need to be overcome. One is the lack of a viable data governance framework. The standard “notice and consent” model for data use doesn’t work well for dementia patients. In the absence of clear prior directives given before cognitive impairment sets in, who should give consent on behalf of the patient?
A World Economic Forum study “Good Data: Data-sharing, public trust and willingness,” provides a practical framework for addressing this challenge, emphasising the importance of governance practices driven by care providers.
Other approaches to these challenges are also developed by the forum-led Data for Common Purpose Initiative, involving a wide range of stakeholders.
Many organisations are focusing on data protection. But the key to eliminating mistrust in data use and fully leveraging the value of data remains elusive. Ultimately, we need to create an ethical framework for data sharing that can be tested and improved based on real-world use.