Addressing the Exclusion of Disabled People in Health Research in New Zealand

Approximately one in every six people in New Zealand lives with a disability, yet a significant portion of health research continues to overlook or exclude this group. Disabled individuals face various barriers when accessing healthcare, not only due to mobility challenges but also because their symptoms are sometimes misattributed or not thoroughly investigated. Additionally, healthcare decisions are often made on their behalf instead of collaboratively, resulting in poorer health outcomes. Despite the aim of health research to reduce disparities, disabled communities are frequently underrepresented or excluded.

A 2023 global review of 2,710 clinical trials revealed that 35% explicitly excluded disabled individuals. Researchers often assume disabled participants cannot provide informed consent, do not meet eligibility criteria, or will struggle with study procedures—assumptions that lack proper ethical or scientific justification. Even when inclusion is considered, practical obstacles such as transportation, communication, and physical accessibility hamper participation.

This cycle perpetuates inequalities, as the lack of research considering disabled people's needs leads to policies and treatments that do not adequately serve them. Since disabled people comprise one-sixth of New Zealand’s population and a similar proportion globally, their experiences and healthcare requirements remain underrepresented in research data.

Beyond clinical studies, involving disabled individuals directly in research design and healthcare planning benefits everyone. Their insights help create services and policies that are more effective, accepted, and equitable. Unfortunately, in New Zealand and worldwide, health research often prioritizes scientific and clinical advancements over patient-centered approaches. Although interest in public and patient involvement is growing, it remains insufficiently integrated into research processes.

Funding trends also favor biological studies over social, mental health, and quality-of-life research, which are often more relevant to disabled populations. For example, a review of autism research funding found a focus on biological causes, whereas community surveys highlight a desire for more emphasis on mental health and practical skill development.

To foster inclusivity, key strategies include requiring the active inclusion of disabled people in grant applications, involving them from the inception of research questions, scrutinizing exclusion criteria, and routinely reporting disability status in study data. Implementing these measures can make health research more representative, ethical, and impactful. Ultimately, ensuring all populations are involved in health research aligns with the fundamental goal of medicine: improving health outcomes for everyone.

Source: MedicalXpress