Gary Allen, Carolyn Ehrlich, Michael Norwood, Delena Amsters, Maddy Slattery

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.

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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1. Perspective:

We wanted to be sure we understood that research consumer reference group members would provide thoughtful advice from their view of the world rather than being thought of as representatives of a group of consumers.
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2. Numbers:

To ensure that there was not a power imbalance between consumers and researchers and to facilitate opportunities to access multiple consumer views, while making meetings simultaneously manageable, the consumer reference group comprised six consumers. Even with six members, we could not hope to ensure that the perspective of people from all types of disability or impairment were able to be included. We needed to be certain that we understood this limitation in our approach.
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3. Transparency about commitment:

We needed to be honest with potential members about what was expected from them. We facilitated this transparency by developing an Expression of Interest that allowed potential consumers to self-determine whether or not their interest and skills matched what was being asked of them by the research team.
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4. Terms of reference:

From the outset we negotiated Terms of Reference with the reference group. These terms of reference supported our commitment to transparency and outlined what was expected from both researchers and consumers.
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5. Inclusiveness:

We aimed to fully utilise the expertise and perspective of reference group members. We sought to engage them in giving feedback about the research design, the language and suitability of material that we were using, and the accessibility of the language we used in materials we developed as a result of the research project.

In addition, we knew that we had to be flexible about meeting times to ensure that each member had the opportunity to engage in and contribute to the research process.
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6. Remuneration:

We understood the importance of remunerating consumers appropriately for the work they were doing to assist our research project. We used guidelines that had been developed by a peak consumer organisation (Health Consumers Queensland) to remunerate consumers for their time and skills.

Despite our commitment to ‘walking the talk’ of involving and engaging consumers by inviting them into a research consumer reference group, there were some real and pragmatic issues we had to deal with as we learned how to work with consumers. In the space where the ‘rubber hits the road’ of consumer involvement in research, there were some valuable lessons we learned and believe ought to be shared.
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7. Consumer skills:

We were told by potential research consumer reference group members that they didn’t consider they had anything to offer the group as they didn’t know anything about research. We believe this anxiety could occur when research is presented as lofty and inaccessible. It is the researcher’s responsibility to explain technical details and research terminology. If we only ever recruit consumers who are tertiary educated professionals, then we risk creating (at best) a limited feedback mechanism or (at worst) an echo chamber of our beliefs. However, recruiting consumers with high level skills and broad life experience is appropriate. Consumers do not have to be expert researchers, but it is useful for them to be able to take multiple perspectives; to understand the inherent challenges that exist in research; and to understand what researchers are trying to achieve. It is helpful if they can reflectively and critically use their own experience and apply it to contexts that might impact upon themselves and others. Of course, this is a two-way skills-set and researchers equally need to be able to reflectively and critically use their experience and apply it to understanding consumers’ real-world experiences.
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8. The practicality of recruiting consumers:

We found that it was beneficial to have an experienced consumer based organisation to support the initial recruitment process. Doing this meant that researchers approached the whole involvement and engagement process in a consumer-sensitive way. A consumer based organisation can advocate for and support consumers even before researchers begin engaging with them.
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9. Managing gaps in research activities:

Our research timeframes were impacted by COVID-19. There were unanticipated and lengthy gaps between research activities, but activity gaps often happen irrespective of a pandemic environment. Infrequent meetings meant that information continuity was lost between meetings. Researchers needed to remember what had been previously communicated with consumers and take action to keep consumer members engaged and updated on progress.
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10. Having one member of the research team as primary contact for reference group members:

To avoid confusion and to ensure relational continuity existed between reference group members and the research team, we thought it advisable to have a single contact point. This designated person was also available to brief reference group members prior to meetings and debrief them as needed after meetings.
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11. Arranging meeting times:

Meeting times were flexible to meet the needs of most, if not all, of the members. We found that it could be exceedingly difficult to find a time that suited all members of the team. Researchers needed to be flexible and meeting times were frequently outside usual business hours (that is 9.00 to 5.00). Still, we sometimes found that even with two months’ notice, it could be challenging to find a mutually agreeable meeting time due to consumers’ existing or prior commitments.
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12. Be inclusive of all members:

Consumers on a reference group are there because they have something to add which will improve the research. Meetings and work must be managed so all consumers get their say and are included. This can be done through effective management of meetings and through using ‘hands up’ tools or similar aids in online meetings. This ensures all members are heard.
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13. Communicating ideas:

One of the challenges of conducting a research consumer reference group was being able to communicate complex concepts in ways that members could fully understand. Where documents contain “research speak”, annotations to provide clarity, a glossary, and a plain language summary can all be helpful. We actively asked consumers to help us communicate our ideas in accessible terms.
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14. Remuneration:

We factored the cost of remunerating consumers into our research funding application. One of the challenges we found was understanding the internal processes for paying consumers for this type of work. Often, we default to using gift vouchers as a mechanism for remuneration. Our approach to renumeration/honorarium in this case reflected our approach as one of respect, dignity and justice. We gave consumers options about what worked best for them. Our experience, however, was that internal bureaucratic processes do not meld easily with what works best for consumers. Understanding internal payment processes prior to engaging consumers is necessary so that prompt payment can be made.
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15. Understanding who members of the reference group are as individuals:

It was paramount that we understood the people we were working with so we could communicate with them in a way that was accessible to them. In a fully ‘on-line’ environment, we had to make sure group members could access and interact within technological limits. For example, the availability and quality of closed captions, meeting recording services. We also needed to spend time getting to know who our research consumer reference group members are as individuals.
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16. Optimally using the skills that consumers bring:

Alongside getting to know who consumers are as individuals, it was important to uncover the skill sets they brought to the team to optimise what was available to us. Some consumers had advanced editing and writing skills, but as a research team, we did not fully appreciate that until quite late in the project. We had to find better ways of working with consumers in ways that benefited them, the research and the research team. We learned that we ought not be afraid of asking members of the reference group for help. In doing this also though, we also had to carefully balance what we were asking consumers to do so we did not ask too little or too much. We also needed to be approachable so that consumers felt confident and empowered to speak out when we were overloading or under-utilising them.

In summary, including consumers as experts in their lived experience and as members of a research team is ideal and a goal to be worked towards. The literature is replete with reasons for doing this. However, until researchers actually get their ‘hands dirty’, so to speak, and start on the journey of including consumers in their research projects, it remains academic and tokenistic. Authentic consumer involvement means trial and error, it means being vulnerable, it means trying and sometimes failing. But it also means being respectful, treating people as equals and wholly engaging with them so that research is meaningful and so that we learn how to best work with people who are impacted daily by the research that we do (or don’t do).
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Acknowledgements

This piece was written based on the experiences of the researchers and the consumer reference group. We are grateful to Carolyn J. Becker, Janelle Colquhoun, Jillian Kingsford Smith, Elizabeth Miller, Leanne Whitehouse, and Dr Barbara Wolfenden for sharing their experiences. Working with the members of the reference group in all aspects of this research project has been immeasurably beneficial. We would like to thank Lis and Jillian for their editing skills which were utilised for this piece.

This post may be cited as:
Allen, G., Ehrlich, C., Norwood, M., Amsters, D. & Slattery, M  (22 February 2021) Heeding our stories: Getting the most from a reference group in disability research. Research Ethics Monthly. Retrieved from: https://ahrecs.com/heeding-our-stories-getting-the-most-from-a-reference-group-in-disability-research/