Summary Report: Virtual Discussion Sessions on Accessibility and Systemic Ableism in the Health Research Funding System

Table of Contents

• Introduction
• Key takeaways
• Overview of the virtual discussion sessions
  • Format
  • Participants
• Barriers experienced by persons with disabilities in the health research funding system
  • Systemic barriers
  • Application Process
  • Peer Review Process
  • Partnership in research
  • Grant and Award Policies
• Proposed solutions
• What’s Next?

Introduction

The Canadian Institutes of Health Research (CIHR) Strategic Plan (2021-31) commits to co-developing an action plan with persons with disabilities. The purpose of the action plan is to address barriers to accessibility and experiences of ableism at CIHR and in the health research funding system.

The action plan will be co-developed with the CIHR External Advisory Committee on Accessibility and Systemic Ableism and build on what we learn by engaging with the health research community. To inform these engagements, we completed an environmental scan of peer-reviewed and non-academic literature and a review of policies and practices at CIHR (to be published in 2023). Our engagements have included a survey for persons with a disability or health condition that affects how they interact with the health research funding system, a survey for allies and those who have helped others navigate the health research funding system, and a series of virtual discussion sessions. Findings from the surveys will be published in summer 2023. This report summarizes what we learned from the virtual discussion sessions.

Key takeaways

The virtual discussion sessions emphasised the following:

• Recognition that ableism is present and reinforced by policies and practices of organizations in the health research funding system, including at CIHR. This creates barriers for equitable participation of persons with disabilities in research and career progression within the health research funding system.
• Acknowledging that while health research funding organizations should address systemic ableism within their own policies, practices, and systems, there is a need for culture shift that should include academic institutions, and other organizations involved in the research process.
• There is a need to invest in disability-specific funding opportunities and in training and mentorship initiatives for persons with disabilities to strengthen their engagement by leading research.

Overview of the virtual discussion sessions

The purpose of the virtual discussion sessions was to learn directly from persons with disabilities about ableism and barriers to accessibility at CIHR and in the broader health research funding system.

Format

Eight virtual discussion sessions were held June to October 2022. In the first four sessions (3 English, 1 French), participants shared their experiences with accessibility barriers and ableism in the health research funding system, including at CIHR. In the next four sessions (3 English, 1 French) participants were given a summary of barriers identified in the first four sessions and then discussed potential solutions. Each session was 1.5 hours in duration and included 8 to 10 participants.

Consultants from One World Inc. hosted the sessions and analyzed the discussions for common themes. A member of the CIHR External Advisory Committee on Accessibility and Systemic Ableism attended as a co-host. Sessions took place on Zoom with American Sign Language, Langue des signes du Québec, and live CART Captioning provided. Online resources were readily available for participants needing support during or after sessions. Materials used in the discussion sessions were provided to participants in accessible formats ahead of the sessions.

Participants

Participants were recruited through an Expression of Interest. Thirty-five persons with disabilities participated. In general, participants:

• Were mostly women (about three-fourths of participants);
• Represented a range of lived disability experiences, including those related to mobility, sight, hearing, pain, neurodivergence, learning, mental health, and chronic disease;
• Lived in Alberta, British Columbia, Manitoba, New Brunswick, Ontario, and Quebec;
• Were mostly scholars affiliated with an academic or research institution and having a range of career levels (about two-thirds of participants), including postdoctoral researchers, early-, mid-, and senior-career researchers, and graduate students;
• Included those who had applied for funding from CIHR (or other funding agencies), with some successfully receiving CIHR funds; and
• Included non-academics, such as research participants, knowledge holders or users, and patient partners.

Barriers experienced by persons with disabilities in the health research funding system

Participants most often discussed barriers that cut across the broader health research funding system with many applicable to specific institutions or organizations, including CIHR. The barriers are summarized below into categories that align with the major components or stages in the health research funding system.

Systemic barriers

These are barriers participants discussed that cut across all stages of the health research funding system and serve to exclude people with disabilities from full participation and equitable opportunity.

• Ableism in research funding: Ableism in health research funding shows itself in ways such as stigma, discrimination, lack of willingness to create accessible requirements, and assumptions about diminished capacity of persons with disabilities to conduct research. Some have been discouraged from persuing an academic career because of these barriers.
• Lack of role models and mentors: Students and trainees with disabilities often do not know accomplished researchers with disabilities for role modeling and mentorship.  Knowing people with lived disability experience who have succeeded in navigating the complex health research funding system and in accessing needed disability supports could encourage students, trainees, and early career researchers to pursue research careers.
• Insufficient institutional understanding of barriers and challenges: According to participants, funding organizations have insufficient understanding or desire to learn about the barriers faced by researchers, trainees, and students with disabilities and how to ensure their full inclusion.
• Accessibility as an afterthought: Accessible business practices are not the norm among research funders. Often, accessibility services are not provided or only available upon request. Absence of accessibility services makes it harder for persons with disabilities to exercise their independence and participate fully with respect and dignity.
• Lower prioritization of the disability community: Some practices give the impression that the disability community is less important than other equity-denied groups. For example:
  • Research funding organizations have dedicated funding for some identity groups, but not for persons with disabilities.
  • Funding opportunities for patient-led research or support for disability organizations to partner with researchers to advance research topics of interest in health research are rare.
  • There are few mechanisms or resources to support the engagement of persons with disabilities in the health funding research system (e.g., in priority-setting, conducting and disseminating research; shaping funding application and review processes; and participation in peer review processes).
• Social model versus medical model of disability: According to participants, health research funding organizations tend to favour research based on the medical model over the social model of disability.
• Lack of coordination across organizations: Funding organizations, and provincial and territorial governments, have inconsistent policies and practices on how they recognize and support persons with disabilities. This can be a barrier for work or study, and may require persons with disabilities to be rediagnosed or to re-explain and re-justify needed supports with each interaction across different organizations (and sometimes within the same organization).

Application Process

These are barriers that participants experienced when undertaking activities to submit an application for a grant or award to a funding organization.

• Inaccessible application platforms: Application platforms often lack accessible features such as font-size adjusters, and alternative text for tables, logos, and images. Although funding agencies have made some progress to improve the accessibility of documents and website content, administrative staff at universities may not maintain the accessibility features of funders’ materials or take the same care in their own communications.
• Lack of available accommodations: There is no formal or systematic process for identifying required supports for accommodation or accessibility. Specific examples discussed included inflexible deadlines and eligibility requirements, lack of support in navigating the application process, and not having an invitation to identify needed disability supports. Inflexible deadlines were highlighted as they do not take into account the additional time and effort required by scholars with disabilities to prepare their application or unforeseen interruptions due to episodic illness.
• Communication with funding agencies: Many organizations have no central contact person with knowledge of policies regarding accessibility or disability supports. Further, funding organizations often rely on the use of phones or email for contact, creating a barrier for some groups of persons with disabilities such as those with  visual and hearing impairments. When invited to information sessions, sessions are not fully accessible, lacking sign language interpretation and CART captioning.
• Institutional gatekeepers: Due to ableism in academic institutions, research funding applications from persons with disabilities may be screened out before reaching health research funding organizations.

Peer Review Process

These are barriers participants experienced during the evaluation of applications for a grant or award by a peer review committee.

• Ableism in peer review: Participants have experienced ableist perspectives in the review process, raising concerns of fairness and equity in adjudication. Specific examples included peer reviewer comments suggesting that persons with disabilities are less capable of conducting research or are too close to the subject to conduct objective research. Some found peer reviewers also questioned the validity of accessibility requests. Funding organizations’ lack of guiding policies or training for peer reviewers on ableism was discussed as an issue.
• Fear to disclose disability: Participants described feeling unsafe to disclose their disability and feared that doing so could be career-limiting. A specific example was the fear that including expenses to cover accommodations could jeopardize their competitiveness for grants and awards or lead to a biased evaluation.

Partnership in research

These are barriers participants discussed related to meaningful inclusion of persons with disabilities in all stages of health research. Health research involves partnerships with multiple players, including knowledge holders and users, patient partners, and communities.

• Tokenism: Researchers and institutions often undervalue the contribution of persons with disabilities on research teams, making them feel that their participation is only to fulfill funding application requirements. Participants discussed rarely being meaningfully engaged across the entire research process. Their lived, learned and professional experiences are often not fully considered in the design of research projects. They also discussed being invited to serve on an established  research team with no involvement in identifying research questions, or in making decisions about research priorities.
• Transitioning into research roles: Persons with disabilities who enter the health research field as patient partners find it hard to progress into a researcher role. Participants reported feeling under-valued for their professional expertise, with limits placed on the type of contributions they could make on the research team. They noted that the system is not designed to support the dual role but to ‘force’ persons with disabilities to choose one role or the other.

Grant and Award Policies

These are barriers discussed by participants related to the policies that must be followed once a grant or award application is successful, such as the Tri-Agency Guide on Financial Administration).

• Budgets without accommodation supports: Budget frameworks of research funding organizations provide little or no resources to ensure accessibility of research processes or full inclusion of researchers, trainees, patient partners or participants with disabilities. Researchers with disabilities must split their research budgets between their research and accessibility needs, but are still expected to be as productive as their non-disabled counterparts (i.e., doing the same with less).
• Accessibility is not mandatory: Participants discussed that research funding organizations don’t require that the research they fund is conducted in ways that are accessible to all participants. As such, research teams don’t feel the need to conduct research or hold workshops with accessibility requirements for persons with disabilities.
• Challenges with compensation practices: Particpants discussed challenges with compensation policies and practices among health research funding organizations. Specific examples included:
  • Lack of consistent compensation policies for engaging persons with disabilities, particularly across similar organizations, such as the Tri-Agencies.
  • Lack of alignment of compensation policies across health research funding organizations, academic institutions, and governments. For example, as taxable income, compensation for participation in research may interfere with eligibility for provincial or federal disability payments.

Proposed solutions

Participants discussed potential solutions to removing and preventing barriers in the research funding system.

• Create a culture of accessibility: Supporting a culture shift to improve accessibility and meaningfully include persons with disabilities would require:
  • Acknowledging the additional challenges persons with disabilities face in meeting the same expectations as their non-disabled peers.
  • Making it safer and easier for persons with disabilities to disclose a disability or chronic health condition in the application processes.
  • Providing information in an accessible way, including accessible application platforms, websites, documents and communications.
  • Normalising accommodations and supports for accessibility in the research system for persons with disabilities (e.g., flexible submissions deadlines in application processes, and career breaks or reduction in capacity for periods for persons with disabilities).
  • Normalising accessibility within research budgets to support needs for persons with disabilities (e.g., assistive technology, accompaniment to conferences, and accessibility services for workshops).
  • Consistently compensating persons with disabilities for their participation in research as patient partners (e.g., to cover costs of participation in knowledge mobilization, and travel to conferences).
  • Recognizing the role of researchers with disabilities with additional funding opportunities to level the playing field when competing with non-disabled peers.
  • Promoting alternative research methodologies, including social model approaches to disability studies.
  • Placing greater value on the lived experiences of persons with disabilities in research.
  • Providing opportunities to inform and embed accessibility best practices in academic institutions and in other health research funding organizations.
• Build capacity in persons with disabilities: Health research funding organizations should invest in network development, training and mentorship initiatives for persons with disabilities to strengthen engagement in research.
• Create new funding envelopes for research and disability research led by persons with disabilities: Health research funding organizations should create new funding envelopes to open up opportunities for persons with disabilities and to help build a stronger disability research portfolio. This would include the provision of funding for research led or co-led by persons with disabilities.
• Develop anti-ableism training and guidelines for peer reviewers: Beyond generic bias training for peer reviewers, health research funding organizations should design anti-ableism training for peer reviewers to prepare them well to evaluate disability-focused research and/or to assess research being led by persons with disabilities. Further, these organisations should develop clear and transparent policies and guidelines for disclosure and for seeking disability accommodations.
• Increase and support representation on peer review panels: Participants recommended ensuring and supporting the participation of persons with disabilities on peer review panels to balance review perspectives of reviewers.

What’s Next?

Findings from these virtual discussion sessions will be used to inform a detailed CIHR accessibility and systemic ableism action plan. This action plan will build on the work of the CIHR Accessibility Plan (December 2022) and aims to eliminate barriers and issues of accessibility across the broader health research funding system.

Date modified:

2023-05-05