No Research About Us, Without Us.

Deafness Forum Australia is a staunch advocate for citizen involvement in research as it is crucial to transform research practices and outcomes for healthier, stronger communities. Towards achieving this, we have provided a submission to the review of the 2016 Statement on Consumer and Community Involvement in Health and Medical Research led by the National Health and Medical Research Council and the Consumers Health Forum of Australia.

Written by Jane Lee, Deafness Forum Australia’s Manager of Health Programs.

There are numerous reasons why citizens should be involved in health and medical research. We’ve outlined them in detail in our submission.

From an ethical perspective, bioethics principles such as autonomy, beneficence, non-maleficence, and justice guide our understanding of a “good life.” Autonomy emphasises the importance of individual choice and control, while beneficence and non-maleficence focus on doing good and avoiding harm. Justice ensures fairness and equity in healthcare.

From a social determinants of health perspective, whole health and wellbeing involves more than just physical health. It encompasses mental and social dimensions, reflecting the interplay between individual and societal factors.

From a citizen advocacy standpoint, we champion the phrase ‘no research about us, without us’. This principle emphasises that people with health conditions or disability, including those with deafness and hearing loss, should be leading research that impacts them. Their expertise and lived experiences are critical to creating research that is meaningful and beneficial.

Yet, evidence indicates that there is too often an absence of citizens in all aspects of the research process from design to involvement to dissemination. For instance, a recent systematic review to understand mental health consumer perspectives on their physical health revealed a notable gap in the lived perspective in comparison to the clinical perspective along with a scarcity of genuinely codesigned and coproduced studies. This represents a serious gap and a significant barrier to developing effective health and medical care.

We need to bridge this gap

Actively involving citizens in research means forming authentic and transparent partnerships where studies are conducted with them, and not merely about, for, to, or on them. This inclusive and equitable approach represents a significant shift from clinicians and researchers dominating which services are provided to allowing citizens to lead the way in defining which services are received.

This transformation empowers them to co-design and co-produce research, ensuring their voices shape the research agenda and outcomes. Their input is vital for research to address real-world needs ethically and practically.

This collaborative model not only respects and honours people’s lived experience and knowledge, but also results in more relevant and impactful research that truly meets their needs and preferences.

As we strive to create a world where holistic health and wellbeing are accessible to all, consumer engagement in every facet of research is not just necessary, it’s the right thing to do. By actively engaging people with lived experience, we shape research to be more relevant, ethical, and impactful.

It is through this collaborative effort that we can truly address the diverse needs of our communities and progress towards a “good life” for all.

Like to read our full submission? Here it is: No Research About Us Without Us

For more current research news, visit