According to the Lunar calendar, 2024 is the year of the dragon. Here at ALEC, it’s also shaping up to be the year of the consumer. For the last 12 months we’ve been talking and working with consumers (people who use and/or are interested in improving health services), asking for help to design and deliver comprehensive, meaningful and impactful ways to involve them in our flagship program, the Living Evidence for Pregnancy and Postnatal care guidelines – or LEAPP for short.
One of our first and best early steps was to partner with Alecia Staines from the Maternity Consumer Network and Michelle King (former chair of our Covid Taskforce Consumer Panel) to design the Terms of Reference and plan and run the recruitment process for Consumer Panel memberst. In response to really helpful widespread promotion by the Maternity Consumer Network and LEAPP’s many partner organisations, we were excited (and humbled) to receive over 100 applications to join our LEAPP Consumer Panel.
LEAPP has a 16-member Consumer Panel, including people with recent experience of pregnancy (most within five years) who have a range of different pregnancy and postnatal journeys. Collectively, members have joined us from most Australian states, metropolitan, regional and remote areas. The also have broad representation that includes culturally and linguistically diverse backgrounds, Indigenous people, recent migrants, young people, and LGBTQIA+.
In a change from how most guideline programs work, LEAPP’s Consumer Panel is the first panel to review draft guideline recommendations developed by the Evidence Team. Their feedback is incorporated into the recommendations before they are reviewed at the Clinical Panels and the Guidelines Leadership Group, before finally being endorsed by the Steering Committee.
‘We have consumer input from start to finish, as the Consumer Panel includes two Co-Chairs and two Deputy Co-Chairs who sit on the Clinical Panels and the Guidelines Leadership Group,’ LEAPP Guidelines Program Manager, Miranda Cumpston explains ‘Then we have the Maternity Consumer Network, represented by Alecia Staines, who sit on the Steering Committee. Taking our draft recommendations straight to the Consumer Panel in this way has been incredible. They give us an insight into what it would be like to be on the receiving end of a particular recommendation, what it means practically for consumers, offer suggestions for re-wording and highlight other aspects we had not considered. The recommendations are greatly improved before they get to the Clinical Panels.’
The LEAPP team has also drawn in more consumer voices, with nearly 600 Australians with recent experience of pregnancy sharing their views across two surveys to reflect on the existing guidelines and prioritise the content of the new living pregnancy and postnatal care guidelines. They also regularly draw on the expertise of the LEAPP Expert Advisory Group, including members who work with women from migrant and refugee backgrounds, and women experiencing extreme disadvantage.
With the first three meetings done and dusted, the LEAPP Consumer Panel is really hitting its stride. As the work of the evidence team ramps up, and they start drafting the recommendations on topics consumers told us are priorities, the LEAPP team can’t wait to deliver more recommendations for Australian maternity care providers that are practical, respectful and patient-centred.
“I am beyond proud to be part of LEAPP. I feel the consumer voice is not only heard but is also really impactful. The entire LEAPP team has worked so hard to provide such an inclusive and welcoming space,” LEAPP Consumer Panel Co-Chair, Ahlia Griffiths.
“There are very few projects that I have been on that have been so willing to be transparent and respectful of the consumer voice. I have always been made to feel valued and that my comments and feedback is welcomed. I think creating such a positive experience certainly translates into me being able to ask questions and provide feedback more willingly,” LEAPP Consumer Panel Deputy Co-Chair, Melanie McKenzie.