PPI

Patient and public involvement (PPI)

Patient and Public Involvement (PPI) 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 PP in research here.

PPI 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 PPI colleagues to date, which include our PPI 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 PPI contributors for SHAPES received a £25 gift voucher as a thank you gift for taking part.

 

 

Janine Smith

Patient and Public Involvement Lead

SHAPES PPI Summary

As PPI 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 PPI 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 PPI 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 PPI 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 PPI members have been welcomed and encouraged to contribute with questions, comments and feedback.

  • We also hold a post-meeting with the PPI 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 PPI activities.

 

"After being approached by Janine to be part of the steering group for this project, I was very happy to take part because the subject of the study was close to me, after being classed as “obese” during my pregnancy. I was keen to not only give my perspective as an overweight pregnant person, but also to see what was being proposed as an alternative to the current screening and treatment process.

The steering group meeting I attended was 2 hours long; it involved a summary of the process and findings to date. It was easy to follow and there were intervals added in to ask questions or add anything we wished to contribute. I also met with Janine before and after the steering group meeting, which was really helpful. I am keen to see the outcomes from the study as any future changes would maybe affect me if I were to have another child."
Emma, mum of one

 

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 PPI within SHAPES has been a positive experience.

It is an experience I am now bringing to other research projects.
Janine Smith
PPI Lead for Shapes & Shapes-Bio

 



If you would like to know more about maternity research PPI opportunities or you are interested in the SHAPES PPI activities you can contact Janine for more information at: hello@janine-smith.com

PPI Case Studies & Feedback 

About Janine Smith, PPI Lead