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
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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.
Disclosure
statement
Rachelle A Martin receives funding from
the NZ Health Research Council.
Kaaren Mathias
receives funding from the Health Research Council and CURE
Kids.
Rachelle
Martin, Senior Lecturer in Rehabilitation &
Disability, University
of Otago and Kaaren
Mathias, Associate professor in public health and
social justice, University
of Canterbury
This article is republished
from The
Conversation under a Creative Commons license.
Read the original
article.
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