Patient and Public Involvement and Engagement (PPIE) Plan

Why Patient and Public Involvement and Engagement (PPIE) Matters

Patient and Public Involvement and Engagement (PPIE) ensures that research is relevant, transparent, and meaningful to the people it ultimately aims to help.

Through PPIE activities, members of the public can:

Share their perspectives on the importance and acceptability of the research.
Help refine study design and priorities.
Improve communication of scientific findings in plain language.
Ensure that research outcomes are accessible and useful to families and clinicians.

Your feedback will help shape how we design and communicate this research — from what questions we ask to how we share results.

Purpose of PPIE

This project aims to co-design and refine a research programme that uses cell-free RNA (cfRNA) biomarkers in maternal blood to predict placenta-related pregnancy complications such as preeclampsia and fetal growth restriction. Patient and public involvement will ensure that the research is shaped by the experiences, needs, and priorities of women and families, and that study materials are clear, acceptable, and sensitive to the challenges of complicated pregnancies.

Who will be involved

Women with lived experience of preeclampsia, fetal growth restriction, or other pregnancy complications.
Pregnant women (with and without complications) and their partners/family members.
Representatives from charities and support groups (e.g., Action on Pre-eclampsia, Tommy’s).
Members of existing PPI panels from my host institution and local NHS Trust.

Proposed activities

Initial workshop (n≈8–10 participants): To introduce the research concept, discuss acceptability of cfRNA testing, and co-design participant-facing materials (plain language summaries, recruitment leaflets, consent forms).
Follow-up online survey (n≈30 participants): To gather wider perspectives on clarity, acceptability, and perceived benefits/risks of cfRNA-based prediction.
Ongoing involvement: Interested participants will be invited to join a PPIE advisory group, meeting biannually to provide feedback on study progress, dissemination plans, and public engagement activities.

Support for participants

Reimbursement of expenses and recognition of time, in line with NIHR guidance.
Online participation to improve accessibility.
Sensitive facilitation and signposting to support resources (given potential for distress when discussing pregnancy complications).

How feedback will be used

Adjusting the language and content of study materials to ensure they are understandable and supportive.
Informing study design, especially around consent, recruitment, and communication of results.
Identifying potential barriers and enablers for participation in cfRNA research.
Guiding communication strategies for dissemination to both the public and clinical audiences.

--- title: "Patient and Public Involvement and Engagement (PPIE) Plan" format: html: toc: true toc-depth: 2 --- ## Why Patient and Public Involvement and Engagement (PPIE) Matters Patient and Public Involvement and Engagement (PPIE) ensures that research is **relevant, transparent, and meaningful** to the people it ultimately aims to help. Through PPIE activities, members of the public can: - Share **their perspectives** on the importance and acceptability of the research. - Help **refine study design** and priorities. - Improve **communication** of scientific findings in plain language. - Ensure that research outcomes are **accessible and useful** to families and clinicians. Your feedback will help shape how we design and communicate this research — from what questions we ask to how we share results. ## Purpose of PPIE This project aims to **co-design** and refine a research programme that uses **cell-free RNA (cfRNA) biomarkers** in maternal blood to predict placenta-related pregnancy complications such as preeclampsia and fetal growth restriction. Patient and public involvement will ensure that the research is shaped by the experiences, needs, and priorities of women and families, and that study materials are clear, acceptable, and sensitive to the challenges of complicated pregnancies. ## Who will be involved - Women with lived experience of preeclampsia, fetal growth restriction, or other pregnancy complications. - Pregnant women (with and without complications) and their partners/family members. - Representatives from charities and support groups (e.g., Action on Pre-eclampsia, Tommy’s). - Members of existing PPI panels from my host institution and local NHS Trust. ## Proposed activities - Initial workshop (n≈8–10 participants): To introduce the research concept, discuss acceptability of cfRNA testing, and co-design participant-facing materials (plain language summaries, recruitment leaflets, consent forms). - Follow-up online survey (n≈30 participants): To gather wider perspectives on clarity, acceptability, and perceived benefits/risks of cfRNA-based prediction. - Ongoing involvement: Interested participants will be invited to join a PPIE advisory group, meeting biannually to provide feedback on study progress, dissemination plans, and public engagement activities. ## Support for participants - Reimbursement of expenses and recognition of time, in line with NIHR guidance. - Online participation to improve accessibility. - Sensitive facilitation and signposting to support resources (given potential for distress when discussing pregnancy complications). ## How feedback will be used - Adjusting the language and content of study materials to ensure they are understandable and supportive. - Informing study design, especially around consent, recruitment, and communication of results. - Identifying potential barriers and enablers for participation in cfRNA research. - Guiding communication strategies for dissemination to both the public and clinical audiences.