by LISA GRECH

A day in the life

This morning started with me trying to unblock the toilet that my daughter had stuffed almost a full double roll of toilet paper into (not for the first time…). While multitasking the toilet disaster and getting ready for work, I was occupying my daughter until her support worker arrived, so I didn’t have any more unwelcome problems to solve. This afternoon I will leave work at 2.30pm because the support worker who would have collected my daughter from her day programme is unwell, and the shift could not be covered. This is the second consecutive Thursday I have needed to do this. My daughter is 20-years-old and has a severe intellectual disability.

As luck would have it, I also have comorbid diagnoses of multiple sclerosis and chronic depression. My own health conditions are relatively mild, if a neurodegenerative condition can be categorised as such, but do interfere with my ability relative to my peers, mainly through slower information processing and, at times, mood difficulties. I’ve had MS and chronic depression and been a primary carer for my daughter the entire time I’ve been establishing my research career.

Equity in funding

As a woman, I welcome the National Health and Medical Research Council (NHMRC) changes aimed at improving gender equality (Kelso, 2022; NHMRC, 2022d), but this also serves to highlight the lack of attention to improving equity and diversity more broadly. Much of my research has been developed from my lived experience. NHMRC recognises the importance of consumer input in research and is improving the commitment to input from people with lived experience in research (Kelso, 2022; NHMRC, 2022a). NHMRC clearly value my lived experience, as I was invited to be a consumer reviewer of the Medical Research Future Fund 2021 Chronic Neurological Conditions grant applications last year which it managed (NHMRC, 2022c). However, NHMRC does not do enough to support consumer-researchers when it comes to equity in funding.

I applied for an investigator grant in the last round. It was unsuccessful. I appealed because I could not see how the system realistically considered my application, relative to opportunity. My appeal was unsuccessful because the NHMRC process was appropriately followed. I have now submitted a complaint to the NHMRC commissioner because the issue is that the process is not appropriate, rather than that it was not followed. The outcome is pending.

The relative to opportunity problem

There are multiple issues with how NHMRC investigator grant relative to opportunity is addressed for a person in my situation. I am not able to apply for career disruption because this only applies if I have taken 90-day continuous leave (NHMRC, 2022b). I can include my personal situation in the career context statement for reviewers to assess my application relative to opportunity. Yet, reviewer guidelines do not provide information about how to adjust for relative to opportunity; they only refer reviewers to the standard category descriptors to make adjustments and to be consistent across applicants (NHMRC, 2022b). Despite this request for individual reviewer consistency, NHMRC acknowledge that the assessment is subjective. The ‘relative to opportunity’ evaluation report states: “consensus is not necessary among reviewers, noting that peer review relies on each individual’s judgement (which may differ from another assessor)” p.5. (NHMRC, 2021). This promotes explicit and implicit reviewer bias (Turnbull, 2016). There is also no reviewer accountability to protect from discrimination and there is a lack of transparency. Reviewers are not asked to state score adjustments made for relative to opportunity claims and no feedback is provided to the applicant about how relative to opportunity adjustments were applied to their scores.

Reviewers are provided no guidance about what category adjustments should be made. Therefore, it is expected that a reviewer will know what the impact of my disability and caring role for my daughter has on my career. No guidance is provided about whether multiple relative to opportunity factors should warrant full category adjustments each or whether there is a ceiling on adjustments. There is no indication how a reviewer manages scores if they judge the claim to only warrant half a category adjustment, as the scoring system only allows for full category assessment (NHMRC, 2022b).

Concerns about whether relative to opportunity disclosures negatively bias reviewers have been documented (Barnett et al., 2022) and disability discrimination in NHMRC investigator grant review has been highlighted previously. The career context statement was implemented as a result of an appeal by Professor Justin Yerbury (Clifford & James, 2020). However, this does not go far enough to reduce implicit reviewer discrimination (Turnbull, 2016). It does not acknowledge that researchers with lived experience provide unique research value.

Targeted, specific, measurable and accountable

For me personally, I will not be applying for NHMRC investigator grant funding in the 2023 round. While I welcome the gender equity policy improvements implemented by NHMRC, they do not apply to emerging leader investigator grants (EL1 and EL2 categories), which is the level commensurate with my career stage. I am also frustrated that a greater focus has not been applied to funding equity relative to opportunity for researchers who provide value through lived experience.  It is only through targeted, specific, measurable and accountable processes that support researchers in minority groups that true equity and diversity in research will be achieved.

Lisa Grech, PhD, MPsych (Clin Neuro), MAPS is a senior research fellow & MS Research Australia Fellow at Monash U

Dr Grech addressed these policy issue in The Mandarin, HERE

References

Barnett, A., Page, K., Dyer, C., & Cramb, S. (2022). Meta-research: justifying career disruption in funding applications, a survey of Australian researchers. eLife, 11, e76123. https://doi.org/10.7554/eLife.76123

Clifford, J., & James, M. (2020, 3 December 2020). MND researcher Justin Yerbury prompts changes to NHMRC grant funding process. ABC News.

Kelso, A. (2022). Towards gender equity in Australian health and medical research funding [https://doi.org/10.5694/mja2.51767]. Medical Journal of Australia, n/a(n/a). https://doi.org/https://doi.org/10.5694/mja2.51767

NHMRC. (2021). Evaluation Report 2021 Investigator Grants ‘Relative to Opportunity’ Trial.

NHMRC. (2022a). Consumer and community engagement. NHMRC. Retrieved 17-12-2022 from

NHMRC. (2022b). Grant Opportunity Documents – GO5390/Investigator Grant 2022 Guidelines v1.0.pdf. NHMRC.

NHMRC. (2022c). MRFF – 2021 Chronic Neurological Conditions Grant Opportunity. NHMRC. Retrieved 17-12-2022 from

NHMRC. (2022d). NHMRC Gender Equity Strategy 2022-2025. NHMRC. Retrieved 17 September from https://www.nhmrc.gov.au/research-policy/gender-equity/nhmrc-gender-equity-strategy-2022-2025

Turnbull, H. (2016). The illusion of inclusion : global inclusion, unconscious bias and the bottom line (Human resource management and organizational behavior collection). S.l. : Business Expert Press.