The Impact of Digital Literacy on Digital Research Participation for Disabled Women and Gender Diverse People in Canada from Diverse Socioeconomic Status Backgrounds

Disabled women and gender-diverse people represent a significant part of the Canadian population and have intersectional experiences and needs which are often overlooked in the greater medical research context. This is exacerbated for those with low socioeconomic status (SES), facing barriers in technology access, finances, and educational attainment. 

Since the onset of the COVID-19 pandemic, the use of digital platforms for both healthcare services (i.e., tele-health) and for research recruitment and participation has been popularised, especially for disabled individuals. However, we lack understanding of the level of digital literacy and participation of the broad spectrum of disabled women and gender-diverse people in using tele-health, and in participating in research. Specifically, we are interested in their experience of using online surveys. Gaining this understanding will allow the development of equitable and accessible tools for disabled women and gender-diverse groups from diverse SES backgrounds as participants and researchers.

DRI research tools often fail to support accessibility and inclusion; a person who is blind may struggle to complete a survey because its platform is not supportive of screen readers; an analysis software may limit gender to male/female binary; low SES populations may lack representation because participation in research takes time away from work and therefore impedes their capacity to earn. Research platforms may be unintuitive for people with few literacy skills, compounded by low SES limitations to accessing online platforms and digital spaces to build digital literacy competency. Improving DRI’s accessibility for disabled individuals, its inclusivity for any gender, and of diverse SES backgrounds will inform the development of disability accessibility requirements that speak to the heterogeneity of the disabled population.

Throughout this study we hope to explore the intersections of disability, gender, sexual identity, socioeconomic status, and migrant status, with a specific interest in the gender and disability intersection.

This project will draw on multiple ongoing projects being conducted by the CERC HECW program, a national survey of women and gender-diverse people in Canada with disabilities based on their previous experiences using primary care services, as well as a survey of women with disabilities living in South Africa regarding their experience of digital technology-based violence, and the subsequent violence reporting and post-violence support. This will involve partnership with DAWN Canada, which is a Canadian national feminist network controlled by and composed of people who self-identify as women with disabilities, as well as the Sexual Violence Research Initiative (SVRI), which is one of the biggest global networks for advancing research on violence against women.

The DAWN Canada survey (opens in new window)  will be co-designed in multiple stages alongside a selected cohort of our target population as well as our partners at DAWN Canada, to ensure that its online distribution method and format are accessible and inclusive, and that the questions we ask will provide rich, valuable knowledge. Results from this exploration of the pilot survey and co-design (through focus groups and using survey responses) will be incorporated as part of our evaluation of digital literacy and digital research accessibility of women and disabled participants. 

The SVRI survey (opens in new window)  will be similarly co-designed alongside community stakeholders, and will be piloted with women with disabilities to ensure that we provide an accessible, inclusive format. Both surveys will be conducted on REDCap, and accessibility needs and inclusivity guides for this platform will be evaluated using responses and critiques of the pilot survey. 

We will also be conducting a scoping review of the current literature surrounding issues of accessibility and inclusivity of digital research for this target population. This review will identify the current understanding of digital research requirements to be able to produce rich knowledge. Overall, we hope to come up with recommendations– based on these qualitative results as well as on the outcomes of the scoping review– for digital survey research ethics, platforms, privacy, questions, accessibility tools, inclusive language, and more.