PPIE

Patient and Public Involvement & Engagement (PPIE) is the partnership between patients and/or members of the public and the research team. This means that PPI members can work alongside research teams and be actively involved in contributing to the research process as an adviser, and sometimes as co-researchers. You can find out more about PPIE in research here.

PPIE members have been involved throughout SHAPES, helping to shape the development and design of the study and reviewing the language used in patient and public facing documents. We would like to acknowledge the contributions from PPIE colleagues to date, which include our PPIE Lead Janine Smith, a number of expectant and new parents in the North East of England, and members of the North East and North Cumbria Research Support Service Consumer Panel. All PPIE contributors for SHAPES received gift vouchers as a thank you for taking part.

 

SHAPES PPIE Summary

As PPIE Lead on SHAPES & SHAPES-Bio, I was given an opportunity to include mums with a range of maternity service experiences in all key stages of the research. This work has included:

  • discussing the research question and the aims of the study
  • helping with the plain English summary
  • attending steering group meetings to help guide the progress of SHAPES
  • advising on recruiting and working with participants on the cohort study
  • developing communication materials
  • discussing the key findings, identifying what is important to focus on and how to communicate these with members of the public as well as expectant parents
  • discussing how to engage with expectant parents and understanding how expectant and new parents gather and use information and social media.

The SHAPES PPIE model has enabled us to have consistent involvement, with fresh perspectives. We have involved a range of mums throughout SHAPES, and we will continue to work with mums from different communities throughout SHAPES-Bio.

 

SHAPES PPIE Model

Due to the length of the SHAPES study, we wanted to include different mums in the steering group meetings, to add a fresh perspective to the progress of the research. So we created a model to make this as seamless as possible for the mums to be involved and to understand the progress of the study.

Three expectant/new parents are invited to take part in the steering group meetings, which has also given us consistency from one mum who was able to attend throughout the study.

  • Before each steering group meeting we hold a pre-meeting with the PPIE members to update them on the study and introduce them to the steering group process. This also provides an opportunity to talk through the presentation slides in advance of the meeting.

  • During the steering group meetings, which were held online, all attendees are encouraged to be inclusive by using lay language, straight-forward explanations and avoiding acronyms. The PPIE members have been welcomed and encouraged to contribute with questions, comments and feedback.

  • We also hold a post-meeting with the PPIE members so have time to reflect on the steering group meeting and have another opportunity to ask questions and provide feedback.

  • This model also involved creating PPI resources to introduce new mums to SHAPES or to update them if they have taken part in other PPIE activities.

 

"Planning and co-ordinating involvement with mums as part of a research team who value and invest in working with mothers to hear their experiences, perspectives and questions has meant that PPIE within SHAPES has been a really positive experience, they have added so much to the study with their experiences and perspectives." Janine Smith, PPIE Lead for Shapes & Shapes-Bio