Article type
Abstract
Background:
The Living Evidence for Australian Pregnancy and Postnatal Care (LEAPP) program is updating the Australian Pregnancy Care Guidelines and developing Australian Postnatal Care Guidelines, maintaining them as living until 2028.
Objectives:
To describe how we have amplified the voices of people with lived experience in the LEAPP guidelines and reflect on our experiences and its impact.
Methods:
Partnering with 2 patient representatives, we co-designed a patient involvement model and expression of interest process. Once selected, the 16-member LEAPP Consumer Panel worked with the LEAPP team to agree on the terms of reference, group agreement, peer support model, and how best to integrate the views of people with lived experience into the guideline development process. Panel members are remunerated, and their involvement is overseen by designated LEAPP staff. Separately, over 380 people with lived experience of pregnancy and postnatal care have also taken part in online surveys to prioritize guideline topics.
Results:
The Consumer Panel includes 16 women and people from around Australia with recent experience of pregnancy and includes people living in regional areas, First Nations people, people from migrant and refugee backgrounds, and LGBTIQA+ people. Four members were appointed as co- or deputy co-chairs. The Consumer Panel is the first group to review draft recommendations, with between 1 and 4 consumers sitting on all decision-making groups that subsequently review and sign off on all guideline content. Consumer Panel members describe what it would be like to be on the receiving end of a recommendation, highlight practical implications for patients, offer suggestions for rewording, and raise additional issues for consideration. Consumer Panel members, the LEAPP team, and clinical panelists have found the experience satisfying, rewarding, and enjoyable.
Conclusions:
The impact of the people with lived experience on the guideline scope, priority topics, and how guideline recommendations are framed and worded has been immense. Having both a stand-alone and integrated patient involvement structure has reinforced and strengthened the "patient voice" in all aspects of the guideline development.
Relevance and importance to patients:
Patients involved in guidelines could adapt our methods or use our findings to advocate for a more embedded involvement model.
The Living Evidence for Australian Pregnancy and Postnatal Care (LEAPP) program is updating the Australian Pregnancy Care Guidelines and developing Australian Postnatal Care Guidelines, maintaining them as living until 2028.
Objectives:
To describe how we have amplified the voices of people with lived experience in the LEAPP guidelines and reflect on our experiences and its impact.
Methods:
Partnering with 2 patient representatives, we co-designed a patient involvement model and expression of interest process. Once selected, the 16-member LEAPP Consumer Panel worked with the LEAPP team to agree on the terms of reference, group agreement, peer support model, and how best to integrate the views of people with lived experience into the guideline development process. Panel members are remunerated, and their involvement is overseen by designated LEAPP staff. Separately, over 380 people with lived experience of pregnancy and postnatal care have also taken part in online surveys to prioritize guideline topics.
Results:
The Consumer Panel includes 16 women and people from around Australia with recent experience of pregnancy and includes people living in regional areas, First Nations people, people from migrant and refugee backgrounds, and LGBTIQA+ people. Four members were appointed as co- or deputy co-chairs. The Consumer Panel is the first group to review draft recommendations, with between 1 and 4 consumers sitting on all decision-making groups that subsequently review and sign off on all guideline content. Consumer Panel members describe what it would be like to be on the receiving end of a recommendation, highlight practical implications for patients, offer suggestions for rewording, and raise additional issues for consideration. Consumer Panel members, the LEAPP team, and clinical panelists have found the experience satisfying, rewarding, and enjoyable.
Conclusions:
The impact of the people with lived experience on the guideline scope, priority topics, and how guideline recommendations are framed and worded has been immense. Having both a stand-alone and integrated patient involvement structure has reinforced and strengthened the "patient voice" in all aspects of the guideline development.
Relevance and importance to patients:
Patients involved in guidelines could adapt our methods or use our findings to advocate for a more embedded involvement model.