Heeding our stories: Getting the most from a reference group in disability research

Man in a wheelchair participating in a meeting at a table

Here, we aim to share insights from a group of Griffith University researchers and a consumer reference group, who worked together on a research project during the development of materials and methods, as well as in the dissemination of research outcomes. The research project we conducted aimed to explore the research experience of people with acquired disability. We wanted to understand what researchers could do better to be more inclusive of people who are often described as vulnerable or marginalised by the National Statement and subsequently Human Research Ethics Committees. We wanted to know how to best include them as participants in, rather than subjects of, research.

Enabled.vip’s CEO Dr Gary Allen co-authored this post about effective reference groups in disability research.

This is not a post advocating for the use of reference groups for research involving those with disability and chronic health conditions. Calls for respectful inclusion have already been eloquently made. Documents such as Consumer and community engagement, recognise their importance, value and celebrate their significance in terms of justice and dignity. Researchers such as Joan Carlini, Kristen Ranse, Noela Baglot and Laurie Grealish (2019) have written about how involving a reference group can enhance research relevance and impact.

Rather than speaking to whether a reference group should be used, this post reflects on the practicalities and logistics of such an engagement.

From the outset, we understood how important it was to engage with consumers who live with disability to guide the research that impacts them. We wanted to know what decisions people with disability made when they were approached to be involved in research and how they made those decisions. But most importantly, we wanted to walk our talk and actively involve consumers with disability in a research consumer reference group that would guide our research. We entered this space of research consumer reference groups armed with good and wise knowledge that is available in the literature. We needed to understand and be cognisant of…

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