Integrated Knowledge Translation: Self-Advocates as Co-Researchers and Collaborators to Improve Virtual Research Methods

Virtual Research Methods for People with Intellectual and Developmental Disabilities
The American Institutes for Research

Submitted by Tonie Sadler, Coretta Lankford, and Jenn Bumble

Focus

The Virtual Research Methods for People with Intellectual and Developmental Disabilities (VRM-IDD) project at the American Institutes for Research® (AIR®) aims to improve methods for conducting research with people with cognitive disabilities in virtual environments. The project staff work with the intellectual and developmental disability (IDD) community to find, test, and share the best ways to conduct inclusive and accessible research online. The goals of this project are to Identify, evaluate, and develop effective online research methods with the IDD community, create a virtual approach for administering the Consumer Assessment of Healthcare Providers and Systems Home and Community-Based (HCBS CAHPS®) survey, and share findings through a three-module online toolkit for researchers, individuals with IDD, and their supporters. The project is in the second year of the 5-year grant.

This Knowledge Translation (KT) Casebook entry highlights Integrated Knowledge Translation (IKT) strategies used to develop and test this online research methods toolkit. These strategies include:

  • Participatory co-production: Engaging self-advocates as active members of the research team to collaboratively create knowledge.
  • Usability testing: Conducting a usability lab at the annual conference held by TASH, an international leading organization in disability advocacy, bringing together co-researchers and self-advocates to evaluate and refine online research methods.
  • Community of practice (CoP): Establishing a space for researchers, self-advocates, and supporters to connect, exchange insights, and foster collective learning.

These approaches demonstrate the power of collaboration in creating practical and user-centered research tools.

Context

People with disabilities, particularly those with IDD, have often been excluded from research both as participants and collaborators (Bard, 2021; DeCormier Plosky et al., 2022; Feldman et al., 2014; Gehlert & Mozorsky, 2018). Reasons for this exclusion stem from concerns about an individual’s capacity to provide informed consent or fully understand the study, perceptions of their vulnerability, and the risk of exploitation (DeCormier Plosky et al., 2022; Feldman et al., 2014; McDonald et al., 2022).

Moreover, when individuals with IDD are included in research, barriers may still exist that compromise the collection of valid, reliable, and meaningful data. Such barriers can stem from the use of inaccessible study materials, insufficient participation supports, or reliance on proxy data rather than directly engaging with the individuals themselves.

The transition to conducting research in remote, virtual environments following the COVID-19 pandemic has introduced both challenges and opportunities for ensuring accessibility and inclusion of individuals with cognitive disabilities. To adapt, researchers have increasingly used remote data collection methods such as telephone and online surveys, text messaging (SMS), and virtual videoconferencing.

Although it is still too early to fully understand the long-term impacts of these methods, benefits and drawbacks are emerging. In response to these challenges and opportunities, the VRM-IDD Project is working with the IDD community and experts in the field of inclusive research to develop, test, and distribute an Online Research Methods Toolkit tailored for researchers, individuals with IDD, and their supporters.

KT Activities

Participatory Co-production

The VRM-IDD team is committed to inclusive research and an integrated knowledge translation (IKT) approach as they develop and test products. Project activities prioritize the lived experiences of people with disabilities, including those with intersectional identities as members of historically marginalized racial and/or ethnic communities. Partners with lived experience, including self-advocates, play a central role in driving the research design and the development of KT products. This includes self-advocates with IDD serving as co-investigators and co-researchers.

The team collaborates closely with TASH, an international leading organization in disability advocacy, which fosters inclusive research through its extensive membership of nearly 19,000 researchers, professionals, direct service providers, family members, and individuals with disabilities. Advisory Panel members bring additional expertise and perspectives, representing organizations, self-advocates, and caregivers committed to improving inclusive research methods.

By leveraging the expertise of this diverse and self-advocate-driven team, the project ensures that the online research tools and methods developed are grounded in authentic experiences and real-world needs. This approach enhances the quality and validity of methods, resulting in practical, accessible, and effective products for the online research toolkit. These inclusive practices not only improve usability; they also promote broader participation, leading to richer and more representative data.

Collaborative Usability Testing

At the TASH 2024 National Conference in New Orleans, the Usability Lab operated as a pop-up to investigate barriers and facilitators to online research participation among individuals with IDD and their supporters (if requested). The study examined critical aspects of virtual research methods, such as online recruitment and engagement, consent processes, survey data collection, interview data collection, and the use of assistive technology.

Sixteen participants tested online consent and survey formats, offering valuable feedback on usability, barriers, facilitators, access challenges, types of support required, and overall user satisfaction. The Usability Lab team conducted interviews during these sessions and collected observations on participant interactions with caregivers, support providers, and peer navigators (when involved). Additionally, they plan to test the online platform via Zoom with 15 more participants, many of whom were recruited at the TASH conference.

The inclusion of peer navigation and hands-on usability testing provided the research team with rich, detailed data about the unique needs and preferences of individuals with IDD. These insights are instrumental in shaping the development of resources for the online research toolkit, ensuring they are user-friendly and accessible.

World Café and Community of Practice

In the upcoming years of the grant cycle, the VRM-IDD team will host a World Café and establish a CoP to further advance its IKT efforts.

The World Café is a strengths-based organizing approach designed to break down social barriers, challenge assumptions, and generate solutions to pressing community concerns. This method has been widely applied within the disability community to address system-level issues and has supported inclusive research led by people with disabilities and helped establish person-centered research priorities within the disability community.

For this project, the goal of the World Café is to foster new knowledge and identify best practices for online research participation by engaging a diverse range of voices, including researchers, service providers, individuals with IDD, and their caregivers and support providers.

The CoP will provide a space for disability researchers, self-advocates with IDD, and supporters to share and exchange promising practices for online research methods. By facilitating ongoing collaboration and dialogue among these groups, the CoP will promote the continuous refinement of research strategies and resources, ultimately enhancing the effectiveness of IKT efforts.

Impact

As findings from research methods and usability studies emerge, these insights will inform CoP discussions with relevant topics integrated into sessions. Additionally, tools and resources developed through the project will be shared with participants and distributed through their personal and professional networks, promoting widespread access and application of these best practices.

Contact Information

NIDILRR Project Name: Virtual Research Methods for People with Intellectual and Developmental Disabilities (VRM-IDD)
Parent Organization: American Institutes for Research
Physical Address: American Institutes for Research, 1400 Crystal Drive,10th Floor, Arlington, VA 22202-3289
Website: https://www.air.org/project/improving-methods-conducting-research-people-cognitive-disabilities-virtual-environments
Key Contact: Coretta Mallery Lankford, PhD, clankford@air.org

References

  • Bard, J. S. (2021). Lifting the barriers excluding people living with disabilities from the benefits of inclusion in research studies. University of Pennsylvania Journal of Law and Public Affairs, 6(3), 489–559. https://doi.org/10.2139/ssrn.3675171
  • DeCormier Plosky, W., Ne’eman, A., Silverman, B. C., Strauss, D. H., Francis, L. P., Stein, M. A., & Bierer, B. E. (2022). Excluding people with disabilities from clinical research: Eligibility criteria lack clarity and justification. Health Affairs, 41(10), 1423–1432. https://doi.org/10.1377/hlthaff.2022.00520
  • Feldman, M. A., Bosett, J., Collet, C., & Burnham-Riosa, P. (2014). Where are persons with intellectual disabilities in medical research? A survey of published clinical trials. Journal of Intellectual Disabilities Research, 58(9), 800–809. https://doi.org/10.1111/jir.12091
  • Gehlert, S., & Mozersky, J. (2018). Seeing beyond the margins: Challenges to informed inclusion of vulnerable populations in research. Journal of Law, Medicine & Ethics, 46(1), 30–43. https://pubmed.ncbi.nlm.nih.gov/30093794/
  • McDonald, K. E., Schwartz, A. E., & Sabatello, M. (2022). Eligibility criteria in NIH-funded clinical trials: Can adults with intellectual disability get in? Disability and Health Journal, 15(4), article 101368, p. 2. https://doi.org/10.1016/j.dhjo.2022.101368