The Child Health and Maternity programme strives to improve maternal and childhood health across the country (Children's Health and Maternity programme - PenARC). A core part of this programme has been patient and public involvement (PPI). PPI is when patients and members of the public work in equal partnership with researchers to do the research. PPI is key to producing high quality research. It is also critical to ensuring that the research being done is relevant and important to patients. Therefore, we wanted to share the learning that has been gained from the programme relating to PPI to help improve how we do PPI in the future. We also wanted to make sure that we shared this learning in a way that would be engaging and accessible to a broad range of people.

I hadn’t done any work on poetry since secondary school, which is a fair few years away now. But thankfully, a more experienced colleague Dr Marie Clancy, from the University's Academy of Nursing, was willing to share her expertise.

I contacted the public members that were working on the programme to share the idea of co-creating a set of poems to share the learning relating to PPI from the programme. The response from public members was positive and very quickly the Poem Creation Group was formed!

I facilitated an all-day workshop on Thursday 26th September where the Poem Creation Group learnt about the technique of found poetry and began to create a poem that would share the learning related to creating ‘safe spaces’ within PPI. It was a thoroughly interesting day that was enjoyed by all the group, and reignited peoples creative passions. The workshop birthed a truly touching poem that speaks to the importance of involving a broad range of people in research and the passion for positive change that public members bring to research. The Poem Creation Group titled the poem – Holding Spaces.

Holding Spaces

We want you to include us in all our colours, shapes and sizes

We want you to hear us tell our stories, like the sun shares its rays. But we anticipate the storms

Where there is darkness we hold a candle to kindness, sensitivity and empathy

We want you to give us your time to see us, really hear us and for us to hear each other. Looking into a mirror, seeing faces smiling back at us

We want you to accommodate our needs, be open, welcoming and supporting. A kaleidoscope of views.

Respectful hearing, trusting hearts, non-judgemental eyes

We want to bounce off each other like skimming stones along the water. We don’t want to work in vacuum, floating alone

We want to feel the wind change and know we have made a difference

Collective minds we all come together like waves across the shore, to make the world a better place.

By Saiqa Ahmed, Shafiq Ahmed, Heather Boult, Abi Gay, Abigail Mensah, Vita Moltedo, Tania Sutedja, Vicky Watts, Jane Whitehurst and Hina Qureshi.

We originally aimed to create one poem from this workshop. But as the day progressed and the Poem Creation Group reflected upon their experiences and the sources for the found poetry, they felt that a second poem was emerging. This poem was markedly different than the first and identified the role that public members often have in opening peoples eyes to the benefits of PPI in research. The group titled this poem – Passionate Believer.

Passionate Believer

We will not just sit and be quiet - Milestone moment

We hear you, we've got your back.

We will not just sit and be quiet - Lightbulb moment

Inspiring, insightful, impactful

We will not just sit and be quiet - Trust-building moment

Talk less and listen more, value our words.

Eyes are opened and views are transformed - Enlightened moment

Changes happen, trust grows.

Research thrives, lives are touched- Healing moment

Passionate believer.

By Saiqa Ahmed, Shafiq Ahmed, Heather Boult, Abi Gay, Abigail Mensah, Vita Moltedo, Tania Sutedja, Vicky Watts, Jane Whitehurst and Hina Qureshi.

The poems produced thus far by the Poem Creation Group show the significant emotions entangled in peoples experiences of involvement. Poetry provides a way for people to share an experience as well as the feelings associated with that experience. As such, poetry is a well-suited partner to convey a more complete picture of involvement than more traditional approaches to knowledge sharing in health and social care research. We are still in the process of co-creating the full set of poems for the programme, and we’re excited to see the poems that emerge next!

This work was supported by the NIHR Applied Research Collaboration South West Peninsula (PenARC)and Yorkshire & Humber.