Involving patients and public in co-designing maternity care improvements – a case study

Contributors

• Bothaina Attal
• Joann Leeding
• Jan W. van der Scheer
• Zenab Barry
• Emma Crookes
• Sandra Igwe
• Nicky Lyons
• Susanna Stanford
• Mary Dixon-Woods
• Lisa Hinton

Why it matters

It is widely accepted that it is important to involve patients and the public in healthcare improvement, but there isn’t always clarity on how to do this in a meaningful and practical way. One reason for this is the lack of clear examples of how to do it well, including methods and ways to report on it.

Common challenges when involving patients and the public in healthcare improvement are power imbalances, limited engagement of minority ethnic groups and those at risk of social and economic disadvantage, and some contributors feeling that they don’t get enough emotional, financial, and practical support.

We wanted to address these problems using a case study to illustrate a principled approach – one that relies on broad, general principles rather than detailed, prescriptive rules – to involving patients and the public into the co-design of healthcare improvement.

Co-design brings together multiple perspectives from patients, families, members of the public and healthcare professionals, to understand and improve healthcare problems from different viewpoints. It involves working together to design and test solutions that reflect real-world needs, perspectives and preferences.

What we found

Our approach included four key stages. These enabled the application of a principled approach to co-design of clinical practice resources for the ABC programme.

Stage 1: Establish PPI principles for the ABC programme

Using literature, and the views of a core group of patient safety advocates with lived experience of childbirth, we established six principles to guide co-design of the ABC programme:

• be transparent and open
• be equitable by providing access and support
• work towards diversity
• listen and respect
• be open to constructive challenge
• provide feedback and recognition

The principles were particularly important in:

• enabling equity and inclusion
• making it easier to co-design with healthcare professionals and those with lived experiences
• ensuring that maternity service user experiences and perspectives would be reflected in the resources co-designed in the programme.

Stage 2: Structure PPI for co-design in the ABC programme

We made sure that structures were in place to allow a diversity of voices to be heard during meetings with women. To ensure that women’s voices were central to the maternity improvement programme, two groups were created.

• A core group of five women supported the entire programme, sharing their lived experiences and expertise, particularly from Black and Asian minority backgrounds and maternity safety advocacy. They met regularly over the programme’s duration.
• A larger group of 15 women met twice to discuss obstetric emergencies, ensuring a broad range of experiences were considered. These members were invited through local Maternity Voices Partnerships to include diverse and underrepresented perspectives.

Each group was designed differently: the core group had ongoing, flexible discussions, while the larger group met twice with focused agendas to allow all participants to share their views.

Stage 3: Co-design clinical resources for the ABC programme with PPI

All meetings and co-design activities with the groups took place online and were organised in an open, informal, flexible, and democratic way to support authentic contribution. This supported the development of the resources in multiple ways, such as strengthening the importance of listening to those in labour and their birth partners, ensuring inclusivity of visuals and language, and developing clear communication guidelines for all resources.

Stage 4: Seek feedback on the co-design process in the ABC programme

The feedback was broadly positive – the group reported that frequent meetings, and inclusion of multiple team members, supported relationship-building, gave time to reflect, helped to build trust and to challenge power dynamics. They said that holding the meetings online enabled people from across the country to take part. The group also valued the opportunity to co-design with clinicians.

Less positive aspects included comments about the fast pace of the programme. Other suggestions included recruiting birth partners, better transparency in PPI recruiting and more clinician involvement.

Next steps

This four-stage approach helped us to make sure that people with lived experiences could influence all aspects of the programme. We have also used the approach to further develop the ABC programme.

Given its flexible nature and potential for improving the co-design of clinical resources, the illustrated approach could be of use to a range of improvement activities, also for areas outside of maternity care.