APAC healthcare data must have ‘disability markers’ for better patient outcomes

The specification in data helps healthcare providers and policymakers improve care for disabled people, increasing patients’ life expectancy.

Healthcare providers should add “disability markers” in their existing electronic health records to improve healthcare services for people with disabilities, who are facing low life expectancy, experts from McKinsey Health Institute and The Missing Billion Initiative said.

In a recent data review, McKinsey Health Institute showed that between 2009 and 2023, 63 out of 188 economies had no data sets with functional-difficulty questions that would assess a patient’s difficulty in completing tasks.

“We see a lot of potential for [these countries] to add these markers to compare [people with disabilities’] health needs, health status, and outcomes of people with different types of disabilities,” Amn Nasir, engagement manager for McKinsey Health Institute, told Healthcare Asia.

“Also, to compare the outcomes of people with and without disabilities, [so] that governments are better able to provide care and serve the health needs of people with disabilities,” added Nasir.

Hannah Kuper, lead on evidence and research of The Missing Billion Initiative, said better data for people with disabilities can address the gap of reduced life expectancy for such patients. The lack of data points to life expectancy of disabled patients, who were found to die at least 15 years early.

“If there’s this failure of data and evidence, that can be a failure to act. On the other hand, if that evidence is available, then it can provide a stimulus for action,” Kuper told Healthcare Asia.

One of the best examples of enhancing data for disability is South Korea, which implements a national disability registration system linked to electronic medical records and national health insurance data.

“For example, if I were a policymaker in their health ministry, I could use this data to identify the differences in cervical cancer care for women with and without disabilities, and can pinpoint exactly where in that care journey a woman with disabilities could face inequities in care, such as lower screening, and then devise policies that help address these specific gaps,” said Nasir.

A healthcare company can boost its reputation for inclusivity, improving the value proposition to customers who may be willing to carry on a long-term relationship. Data from McKinsey showed that over 1.3 billion people are living with disabilities all over the world.

Tools for helping the disabled

Aside from disability markers, Nasir pointed out that data collection is also needed to enhance data for disabled patients’ services. Take the UK, for example, where a voluntary registry is made available for people with learning disabilities. This sector can be better served with longer appointments and the use of accessible communication material to aid them in making decisions regarding their healthcare needs.

Conducting surveys is also necessary, even by using simple technology such as tablets and mobile phones, said Nasir.

Meanwhile, to bridge the gaps in data usage and analysis, there is potential to use machine learning, advanced analytics, and geospatial mapping to analyze health data.

Using these tools will help healthcare providers correlate disability health data to other relevant information like social economics, for example. Identifying the linkages between all of these issues and then publishing the comprehensive data would be useful for policymaking.

For Kuper, healthcare delivery for disabled patients can be enhanced by using tools and technology such as integrating sign language interpretation.

Technology can also be used for training healthcare workers through online modules or even AI modules, and peer support networks.

She cited Malaysia as one of the best examples among Asian countries, where smartphone applications were developed to support people undergoing rehabilitation after a stroke. And then, there’s India in terms of telemedicine delivery.

Incentives for registration

McKinsey and The Missing Billion Initiative’s recent study also indicated that data can be improved by encouraging a high percentage of registries from disabled patients. Kuper said some countries in the world, even in Asia, offer disability allowances which can be a great mechanism to link this incentive to healthcare data.

“[A] great example [is] South Korea’s health insurance creating a marker on disability, and that can be linked. So, that provides a good avenue that we need to think about purpose either increasing the purpose for registration or trying to link registers where people are getting a benefit to the health data,” she said.

“I do think though, that the future really is in using these large electronic health records, and perhaps using AI or machine learning to come up with disability markers because we'll never be in a situation where all people with disabilities are registered,” she added.

Stakeholders’ funding

Stakeholders, including government, donors, and funders, can also help bridge the gap in disability care through funding.

The government should include a funding line to add disability questions on surveys, according to the study. Now, the maturity level for this is still low.

Donors should also fund technical assistance and analytical capacity for national disability as well as health surveys, read the study.

In addition to this, the donors should also “fund research and advocacy to align on best practices for data collection and analysis, including the criteria for a person to be determined as having a disability.”

Hiring more disabled people

The study also revealed that physicians are not confident in working with people with disabilities.

To address this, Kuper advised an increase in accessibility of healthcare facilities to ensure that people with disabilities can come into the buildings and use the equipment and toilets.

Healthcare providers must also have a strong partnership with persons with disabilities that will help doctors better understand the needs of these patients, Kuper said.

Finally, Kuper underscored the employment of people with disabilities to support these patients and raise awareness of their unique conditions.

In Singapore, there is a growing interest in employing people with disabilities. Over 700 employers had offered 2,000 jobs between 2018 and 2022, according to SG Enable, the focal agency for disability.

Accenture’s research also showed that companies leading in disability inclusion outperformed their competitors, with 45 of the firms reporting 28% higher revenue.