Designing for Disability-Inclusive Data Collection

By Rachel Bernstein, posted on
Close up of hands holding a smartphone with screenshots of the accessible smart phone app.
The app offers information and asks questions using easy to understand language and illustrations to convey meaning. Users can choose to respond to questions using audio, video, or text input. The example screenshots in the above image ask about the best means for information sharing, such as text or phone call, and whether users have access to needed medication.

This World Creativity and Innovation Day we want to share the work we’ve been doing to support people with intellectual disabilities to hold governments to account.

As part of the Inclusive Futures consortium, we’ve teamed up with Inclusion International to combine our expertise in technology with their work representing people with intellectual disabilities around the world.

Data Informs Policy and Empowers Advocates

A key challenge faced by disability rights activists is the lack of data about the actual implementation of the UN Convention on the Rights of Persons with Disabilities. They need information about how it is reflected in the everyday lives of people with disabilities.

Systematic collection of that data and the first-hand stories of people with disabilities allows advocates to engage government and other decision-makers with concrete figures and examples of the gaps and barriers people face to realizing their rights.

People with disabilities who are not leading these policy discussions are still often active self-advocates, so it is important for them to have accessible, locally-appropriate  information about their rights and entitlements.

Data for Inclusion is an information exchange between advocacy organizations and the people with disabilities they represent and support. We use mobile apps to share rights information while also collecting data, stories, and reflections directly from people with disabilities. Then we support advocates to use that information in coordinated campaigns.

Iterative Testing with Local Partners Informs Design

We’ve specifically begun designing and testing these mobile apps with and for people with intellectual disabilities. Benetech has worked closely with local Inclusion International member organizations, SEID in Bangladesh, and Kenya Association of the Intellectually Handicapped (KAIH). Our iterative approach means self-advocates provide input on every step of the process. With their guidance, we have ensured the apps are accessible by making the informational content easy to read and providing multimedia options for interactions.

A major challenge when using tech with marginalized communities and in low resource contexts is that – even if the software is accessible and designed inclusively –  people have limited connectivity and access to devices, and often limited education or awareness of using these devices. This has been exacerbated by the economic impact of the pandemic. So, part of our iterative design process is addressing those barriers to participation and creating alternative models for engagement. Working closely with local partners and including self-advocates and their supporters in the design process has been critical to making these strategies viable.

User Feedback Shows Need for Innovation

The feedback from testing is very encouraging – people are excited about a mobile app because it’s something new, and they also really appreciate the multimedia interactions. We have found that audio and video options are the best way for people to communicate. Early testing feedback has also highlighted the importance of providing audio options for consuming all the informational content.

In Kenya, testing was focused on COVID-19 and the impact of the pandemic – information about people who have lost jobs, whose family have lost jobs, and who are having trouble accessing healthcare. These topics are immediately relevant and at the forefront of everyone’s mind. We’re still in development, but people are eager to have their voices heard.

Within the Data for Inclusion model, these local partner organizations own the central data hub where they can aggregate and analyze the information they gather through the mobile app. Our next co-design challenge is to ensure they can effectively use the data in advocacy.

Innovation doesn’t stop at technology development. I encourage you to read the stories from all of our Inclusive Futures partner organizations to learn how they are embracing creativity and innovation to advance disability inclusion in global education, employment, and health. To find out more visit: www.inclusivefutures.org/innovation and follow #InclusiveFutures on Twitter and LinkedIn.

Read more stories from Benetech: Using Personal Experience for Advocacy: Benetech Board Member Dr. Katherine Schneider