Engaging consumers from diverse backgrounds in guideline development: lessons from research & real world settings

Translating research into practice is often easier said than done, and can take years. Not so in the case of the latest findings on consumer engagement in guideline development.

Researcher Dr Annie Synnot co-authored a scoping review on broadening the diversity of consumers engaged in guidelines in BMJ Open earlier this year. She was then quick off the mark to test the findings in a real world setting, as Methods Chair of the National Covid-19 Clinical Evidence Taskforce Consumer Panel.

‘There hasn’t been much research to support guideline developers to be more inclusive when it comes to consumer representation,’ Annie explains, ‘so our review is really the first in-depth exploration of how to foster and facilitate input from consumers with diverse backgrounds.’

‘Ultimately our findings underscored the importance of relationship-building, mitigating power imbalances and meeting consumers where they are at,’ she says. ‘We know that building formal, respectful partnerships and employing inclusive engagement methods can help us do this. We’ve certainly found this to be true in our work with the Taskforce Consumer Panel this year.’

‘I think this is significant on a number of levels. If we go back a step, it’s worth noting that many guidelines don't include consumers at all. Including consumers from diverse backgrounds requires even more expertise and resources, and often guideline developers don't really know where to start.’

‘This is where our review comes in. Our findings offer many ideas for guideline developers to shape or refine their approaches, and hopefully provide all parties with more meaningful and valuable experiences and outcomes.’

‘In terms of my own work this year, I have drawn on what we learned in our diversity review to recruit new members of our Consumer Panel, including people from culturally and linguistically diverse backgrounds, Indigenous Australians and people who are immunocompromised. This has been incredibly successful. We welcomed four new members who are making a brilliant contribution.’

‘I have also tweaked some of our processes in areas that the review highlighted as important, such as making sure people feel supported, well oriented and able to give honest feedback. For instance, when consumers provide input we let them know how this has been used and the impact it's had. We also introduced a quick and anonymous feedback process. We send a one minute survey after each meeting – just to check in and see if there’s anything we can do differently.’

‘Through these surveys, and informal conversations, our consumer members tell us they have valued their experiences on the panel, have felt very much part of the Taskforce, and are respected and supported.

‘From my perspective, it's been really rewarding to first identify the key lessons in the literature, and then apply this in practice, and really understand what it looks like to genuinely involve consumers in the process.

‘The landscape and momentum around consumer engagement has changed so much over the last five years. At first the guideline community honed in on what it means to engage consumers as a broad group, but we're now moving to that next level of bringing in the people that we haven't been able to include. I think we will see this happening more and more.’

‘The questions around the cultural readiness of organisations and the time and resources available to do this work remain, but our review provides another piece for the diversity puzzle. So in a nutshell, if guideline developers want to include consumers from diverse backgrounds, I think our review findings can really help them.’