Wheelchair User’s Voice

The Problem

Absence or inappropriate wheelchairs is a critical barrier to function with autonomy in community, to better health and economy improvement- it is not being strategically addressed in low resourced countries.

The Big Idea

To provide quantitative and qualitative information that will strike transformation to improvement in outcomes and efficiency, to drive high-value based delivery of wheelchairs and services.

The “Wheelchair User’s Voice” (WUV) Project is funded by Google.org as one of the ‘big ideas that use technology to expand opportunity and independence for people with disabilities’. It was funded under Google’s Impact Challenge – Disabilities. Read more here.

The WUV Project uses the Internet of Things (IoT) to provide quantitative and qualitative information that will transform the outcomes and efficiency of wheelchair provision in low- and middle-income countries. High-quality data will show best methods  and best areas for improvement. This will help NGOs, donors, and national government agencies to make better use of their resources to meet the goal of expanding opportunity and independence for people with disabilities.

WUV aims to transform how people with disabilities (PwD) in developing countries receive wheelchairs by enabling decision makers to make data-driven choices regarding chair type, quality and clinical provision processes. Ultimately, the goal is to give guidance to policy makers on how best to provide wheelchairs so that users achieve maximum independence and community participation.

guv four together

Yanto, Kuku, Darmanto, and Sri (from left to right) send SMS messages after the WUV datalogger is installed on their rear wheels.

 

The WUV Project will study PwD in Indonesia and Philippines (other countries are not yet selected) by using a Lean Research approach which will gather data from data logger sensors (accelerometers, flexiforce and environment sensors) on wheelchairs, and from user feedback via SMS questionnaires and person to person surveys. By adding the user’s wheelchairs to the Internet of Things, analyzing the data from a cloud platform, and aggregating the data for further study by experts, WUV will open new windows to understanding the best ways to serve wheelchair users. Comparisons  and correlations will be made between users who receive service consistent with the World Health Organization’s 8 Steps and users who receive minimal service. Also, there will be comparisons between high and low quality wheelchairs.

From the data, we expect to learn about the impacts of an appropriate wheelchair in regards to the user’s quality of life, health, independence and social integration. Wheelchair quality, durability and good fit impact economic factors both for the user and for governments. For users economic factors include total cost of ownership, losses or gains related to the stability of access to work or school, and days of income lost due to sickness or injury. For governments economic factors include frequency of wheelchair replacement and hospital costs related to secondary injuries and deformities. Real mobility maximizes opportunities for people to study, earn a living and exercise human rights. The data will point to the most cost efficient ways to achieve real mobility.

WUV will use the Internet of Things to gather data by:

  • Providing and tracking an array of manual wheelchairs to people with a range of mobility disabilities
  • Interviewing wheelchair users as they receive their wheelchair, and at the end of the studyguv on wheel
  • Collecting data from data loggers on each wheelchair to determine durability and other data points
  • Communicating with users regularly via SMS text message questionnaires regarding  the wheelchair’s usability, quality, durability, the user’s social participation
  • Tracking changes in users’ independence, health, and overall quality-of-life
  • Gathering this data to a single hub that allows for cleaning, aggregation and analysis
  • Big data visualization

The data collected by WUV aims to:

  • Provide essential information for product designers, purchasers, standard-setting organizations, policy makers, funders and future users
  • Drive development of evidence-based best practices on the provision of wheelchairs
  • Transform the existing market by equipping buyers with data so that their limited funds can be best spent to maximize positive outcomes for users and serve the largest possible number of users
  • Contribute with International Society of Wheelchair Professionals (ISWP) update to the ISO 7176 durability test protocol
  • Strengthen ongoing efforts to close the ‘missing bridge’ by accessing additional funding for assistive technology
  • Motivate researchers to use WUV cloud clean aggregated data platform to analyze and provide action-driven answers

Problem Background and Current Condition

Why are we doing this?       

Approximately 15% of the world population has a disability, 10% of this group needs a wheelchair, and 85%-95% of that need is unmet – over 60 million people. Eighty percent of PwD live in developing countries where 1 in 5 people have a disability.

Unfortunately, despite the growing and widespread interest in closing the gap, there is a shortage of reliable accurate and actionable information. There is much to be learned generally about disability in low- and middle-income countries, the real impacts of wheelchair provision services as well as product quality, and simply a perspective directly from wheelchair users. Users deserve to be included. The “Nothing about us without us” principal holds true. Together this information can be used to advance policy change, to understand cost-effective impact, and to strategically plan provision services.

Because wheelchairs are primary mobility devices for individuals with mobility disabilities, wheelchairs are a powerful accelerator to increasing independence and social integration. Wheelchairs not only provide mobility to PwD, wheelchairs also improve general health and quality of life. These advances open doors to economic and social opportunities for PwD and their families. Access to wheelchairs has been known as a “missing bridge” to human rights and development according to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) 2006. Under the UNCRPD, independent mobility is a human right and people with disabilities are entitled to demand access to an appropriate wheelchair.

The World Health Organization and the United Nations are moving away from the traditional medical and charity models of disability and they are moving toward a social and human rights model, which recognizes the right to medical intervention and to assistive technology. The social and human rights model promotes participation and comprehensive accessibility as core disability-inclusive principles. Viewing the person first, and recognizes capacity, right to participation and social responsibility for inclusion for all.

This social and human rights model contrasts to the charity model in which wheelchairs are bought by a third party, such as a non-profit organization. The products and clinical services often fail to meet the user’s needs (functional, environmental, posture support). And, because they are a gift, the products sometimes do not meet international standards for quality. On top of that, the clinical services are often provided by inadequately trained personnel and elements which have been shown to be critical for good user outcomes, such as wheelchair mobility skills, follow up service, and maintenance service, are often not available at all.

Despite noble mission statements, the real work of providing mobility is left undone. Charity delivery approaches and payment structures, which have remained largely unchanged for years, have reinforced the problem and produced a system with erratic quality and unsustainable costs.

All this is now changing, as many countries are in discussion about the inclusion of wheelchair provision into their government insurance systems. However, they lack of data to guide their decision making and purchasing. WUV aims to build guidance built on meaningful data and user’s voices.