Summary Report: Survey on Ableism and Barriers to Accessibility in the Health Research Funding System

In Fall 2023, CIHR hosted an online survey on ableism and barriers to accessibility in the health research funding system. Two different versions were available. One version was for persons with disabilities and one version was for their allies. CIHR developed the survey based on its environmental scan and consultations with the External Advisory Committee on Accessibility and Systemic Ableism (EAC-ASA). The survey was available in English, French, American Sign Language, and Langue des signes du Québec.

The survey was one form of evidence used to develop "From Intention to Impact: CIHR Anti-Ableism Action Plan".

1. Survey respondents

Persons with disabilities

102 respondents completed the version of the survey for persons with disabilities. In general, respondents:

• Had applied for funding from CIHR (over two thirds).
• Identified as researchers (just over half), women (over two-thirds), and white (close to three-fourths).
• Lived in Ontario, Quebec, British Columbia, Alberta, Manitoba, Nova Scotia, Saskatchewan, New Brunswick.
• Represented a range of lived disability experiences, including those related to mobility, pain, chronic illness, mental health, neurodiversity, flexibility, communication, hearing, sight, dexterity, memory, and learning.

Allies

18 respondents completed the version of the survey for allies of persons with disabilities. In general, respondents:

• Were mostly researchers and professors from post-secondary institutions.
• Witnessed or supported others who applied for funding from CIHR (over two-thirds).

Acknowledgements

We would like to thank everyone who responded to our survey. We appreciate your time, energy, and thoughtful answers.

2. Survey findings

The survey asked respondents to share their experiences or observations about barriers in the health research funding system using multiple choice questions. For these questions, respondents could choose more than one answer. Respondents could also provide additional information on these barriers using text boxes. Responses were summarized using frequency counts, meaning we counted the number of times responses were selected. Only the most common responses were summarized in the findings below.

a) Barriers experienced at CIHR^{Footnote i}

Application process

• Accessibility information is hard to find: Respondents expressed that it is often difficult to find information about the application process or accessibility supports available on CIHR webpages.
• Application platforms are hard to navigate: Respondents stated that using CIHR's application system is often difficult and inefficient. They also reported application forms are difficult to complete using the system.
• Funding opportunities are not inclusive: Respondents described that they are not sure when and how to include concepts of disability in a research proposal. In addition, they shared that it is difficult for them to know where to include non-traditional forms of knowledge (e.g. dance, plays, musical performances, etc.) in their applications.

Peer Review

• Conscious and unconscious bias related to applicants: Peer reviewers may not understand how disability can impact career progression and traditional measures of research productivity/excellence (e.g. number of publications, principal investigator status, etc.).
• Conscious and unconscious bias related to research design: Peer reviewers may not see the importance of incorporating accessibility supports and/or budget in research design and including persons with disabilities as participants in research.
• Fear of disclosing disability: Respondents reported not wanting to disclose their disability out of fear that it would lead to a biased review.

Grant and Awards policy

• Eligibility requirements limit participation: Respondents who conduct research and are not affiliated with an academic institution expressed that they have difficulty meeting eligibility requirements because their institution is not eligible to administer CIHR grants and awards.
• Challenges interpreting the use of CIHR funds: Respondents found that it is difficult to know whether they could use CIHR funds for accessibility supports. Specifically, it is difficult to interpret the Tri-Agency guide on financial administration.

Giving advice and guidance

• Challenges finding information on accessibility supports: Respondents reported that when fulfilling an advisory role or giving guidance to CIHR it is often unclear whether accessibility supports were available.

b) Barriers experienced at other funding organizations

• Bias or lack of understanding: Respondents experience a lack of understanding or bias when disclosing a disability or making an accommodation request. Specifically, respondents reported that funding organizations have an overall lack of knowledge on disabilities.
• Accessibility information is hard to find: Respondents expressed it is difficult to find information related to accessibility supports. There is a lack of clarity on where to find this information on webpages or who to contact to request accessibility supports.
• Conscious and unconscious bias in peer review: Respondents shared that they experience a lack of understanding or bias when their applications were reviewed. Overall, reviewers lack knowledge on disability.

c) Barriers experienced at academic or research institutions

• Ableism: Respondents shared they felt expectations to fit within work standards of non-disabled people. For example, academic or research institutions often have limited flexibility for part-time work, little or no access to disability leave, and use a narrow definition of disability.
• Discrimination: Respondents described the discrimination they face from colleagues or students based on having a disability or having disclosed a disability. For example, not feeling valued or having their work being attributed to others.
• Inaccessible work environments: Often respondents reported having to navigate unclear policy on accommodations, receiving little or no support for accommodations and/or feeling there is lack of transparency in seeking accommodations.
• Burden to prove disability status: Respondents shared they often experience the burden of having to prove their disability or health condition. For example, the time and resources required to provide their institutions with proof of a disability or health condition, to receive accessibility supports.
• Inaccessible documents: Respondents reported that institutions did not provide accessible documents. This makes it difficult to receive information or complete necessary forms.

3. Suggestions from respondents^{Footnote ii}

The survey also asked respondents for their ideas on addressing barriers using open-ended questions. Respondents identified the following suggestions most often.

• Improve CIHR organizational culture: Designate CIHR support staff to assist applicants or potential applicants with accessibility inquiries.
• Improve transparency of self-identification: Provide more information on the use of self-identification information and make it safer for persons with disabilities to disclose a disability or chronic health condition.
• Consider including lived or living experience in research design: Incorporate the lived and living experience of persons with disabilities into funding opportunities and applications. For example, people with lived or living experience should contribute to the design phase of research projects so their contributions can be effective.
• Build capacity for persons with disabilities: Establish a mentorship network to strengthen the opportunities for persons with disabilities to participate in research.
• Establish new funding opportunities: Launch new funding opportunities specific for persons with disabilities and/or new funding opportunities to engage persons with lived and living experience in the application process.
• Extend application deadlines: Give applicants more time to complete applications. For example, offer rolling deadlines or later deadlines for applicants who are also peer reviewers.
• Improve communications and application platforms: Ensure information about accessibility support, resources and documents for applicants is easier to find and accessible.
• Improve the accessibility of providing advice and guidance: Develop guidelines for engagement with persons with lived or living experience in research.
• Develop training and guidance for peer reviewers on disability: Develop training and guidance that will improve the awareness of disability research and the impact disability has on research productivity and career progression. In addition, give peer reviewers clear assessment criteria and redefine the definition of research excellence.
• Increase the representation of and support for persons with disabilities in peer review: Integrate persons with disabilities into peer review to have a balance of perspectives Incorporate the use of assistive technology in meetings, offer more breaks, and reduce the length of meetings.

Date modified:

2024-12-03