1 in 6 New Zealanders is disabled. Why does so much health research still exclude them?

Disabled people encounter all kinds of barriers to accessing healthcare – and not simply because some face significant mobility challenges.

Others will see their symptoms not investigated properly because it’s assumed a problem is related to their disability rather than another medical condition. Or they will have decisions made for them rather than with them.

This often means they experience worse – and avoidable – outcomes compared to others. But despite this, health research – which is meant to reduce these disparities – frequently excludes disabled people.

For instance, a 2023 global review of 2,710 clinical trials found 35% reported excluding disabled individuals specifically. Researchers sometimes assume (without a good ethical or scientific reason) that disabled people can’t give consent, don’t meet the study criteria, or will struggle to follow instructions and collaborate.

Even when researchers are more inclusive, their plans can fail to account for the difficulties disabled people face with travel, communication and physical access. All of which makes it harder for them to participate.

This creates a vicious circle. Health research is vital for shaping the policies, treatments and community interventions that underpin modern healthcare. However, for disabled people, who make up one-sixth of the national and global population, too much research does not reflect their experiences and needs.

Beyond clinical and scientific research

The active participation by disabled people in health research is good science, good economics and the right thing to do. When people with lived experience contribute to the design and delivery of health care and research, it means services are used more and fairer outcomes are achieved.

But this is far from the reality in Aotearoa New Zealand and around the world. Scientific and clinical research is still often viewed as being more important than research addressing the needs of patients and people, as prioritised by them.

There is increasing interest in public and patient involvement in health services, and to a lesser extent health research. But this is not sufficiently embedded or formalised. Research priorities are still set primarily by clinicians and medical researchers.

Most funding still goes to research investigating the causes, genetics and treatment of health conditions. And while these are important to study, there is still too little research focused on how people can live well with disability.

A recent review of research funding for autism, for example, found the most money and number of grants were awarded to biological research. But a survey of about 500 people from New Zealand’s autistic and autism communities found people wanted more research into their mental health, wellbeing and practical skills development.

If research aims to improve health outcomes for everyone, it must involve all populations – particularly those most at risk of poorer health outcomes.

This extends beyond people with disability to include all marginalised and often excluded communities. But this kind of change will need action at different levels of research, and to be led by researchers themselves. The rules and funding systems must also support a more inclusive approach.

Practical steps to make a difference

Some of the key strategies needed to ensure health research becomes more representative, ethical and effective have been outlined by the Disability Inclusion in Research Collaboration, a global network of researchers:

• Making sure disabled people are visible in research grant applications: funding bodies must actively require and reward the inclusion of disabled participants in health research studies.

• Including disability perspectives from the very start: disabled people should be involved in formulating research questions, designing studies and advising on accessibility measures.

• Ensuring disabled people are research participants whenever possible: researchers must clearly explain and justify any exclusion criteria related to disability, which need to be grounded in legitimate safety or ethical concerns rather than mere assumptions.

• Making it routine to report on disability status: research studies should use data to identify, track and report on participants’ disability status, so it is easier to monitor inclusion efforts and outcomes.

By committing to these basic measures, health research can become more representative, ethical and effective. It will also help the research produce insights relevant to a broader range of people, ultimately leading to stronger and fairer healthcare systems.

This is about more than justice for disabled people. It is about ensuring medical research achieves its true purpose: to improve health for everyone.