The NIHR funded RELAX study tested an easy-to use online training for pregnant women and birthing people with mild to moderate anxiety, which was designed to help reduce their worry and anxiety. The study aimed to test whether adding RELAX to usual maternity care can prevent anxiety increasing during pregnancy and after birth. As the study comes to an end the study team came together to share their reflections on public involvement which they hope will help other groups and individuals interested in doing patient and public involvement in research, including researchers, health service users, patients and communities. 

A group of women public involvement members and researchers gather around a table to discuss the RELAX study

At its best, PPI in research can improve the quality of research studies. When practiced as a democratic process it can give groups of people a voice about their healthcare options, build confidence and skills among those involved in co-design, and increase trust in research with communities. We hope our reflections and tips will help research groups work together creatively and to full potential.

Mary Newburn

Mary Newburn, patient and public involvement lead

Over the course of the RELAX study, the team had a multi-ethnic group of 20+ public involvement advisers, many with lived experience of perinatal anxiety, as well as some representatives of large organisations and smaller grassroot community organisations. A core group of 15 public involvement advisers continued to work with researchers until the end of the project. 

Equity, diversity and inclusion shaped every stage of the RELAX project. Our public adviser group was multi-ethnic, with many women bringing direct lived experience of perinatal anxiety. This mix created a richer understanding of how culture, identity and personal history can influence the way anxiety is felt, interpreted and described. It also helped us design language and study materials that were culturally appropriate and sensitive to different forms of expression. Advisers challenged assumptions, flagged unseen barriers and helped the team check that everything felt respectful and accessible for a wide range of women.

Abigail Mensah

Abigail Mensah, public involvement adviser

Some of the key tips and learning in the report include: 

  1. Plan for inclusivity from the start - Equity, diversity and inclusion (EDI) are three important values to guide who you involve and how you work together. Share what all team members know and think about training needs. ‘Trauma-informed’ working may be important, too, depending on your study. 
  2. Work your community connections- Researchers need community connections and links with relevant voluntary sector organisations. It takes time to build trusting relationships; finding community leaders or well-connected individuals is an important step. 
  3. Values matter - At an early planning meeting, it may help to create a list of values that you want to adopt explicitly. Here is an example of a values statement developed by an ARC- adopted research study, the MUMS@RISC: Charter for research engagement 
  4. Consider the evidence you need for reporting PPIE - If you aim to report the impact of PPIE in research, be sure to collect sufficient data in enough detail. The Public Involvement in Research Impact Toolkit (PIRIT), for example, may be a helpful guide. 
  5. Build in review discussions and reflections -  Reflect as you go along, audio-record (with permission) and write things down. This is valuable as public involvement is a complex process. It is impossible to think of everything or address every aspect of PPIE aims and methods in advance. 
  6. Everything will take much more time than you anticipate - Like every other aspect of research, doing public involvement well takes time, thought and effort. So, it’s important when planning to double and triple the time you think might be needed. 
  7. Relationships are important - The more opportunities there are for the whole team to interact, share something about themselves that is not related to the project and have a laugh (or extend empathic listening) the more easily the wheels will turn. 

Find out more

Read the report – Diversity, relationships and community leaders – Public involvement tips and reflections from the RELAX  (Reducing Levels of Anxiety in pregnancy and after birth) research project.  

The report was co-produced by Mary Newburn, patient and public involvement and engagement (PPIE) lead for the RELAX (Reducing Levels of AnXiety in pregnancy and after birth) project; public involvement advisers, Abi Gay, Abigail Mensah, Siobhean McCarthy-Perham and Tanjida; and King’s College London researchers, Brittannia Volkmer, Colette Hirsch and Nathalie Towner. 

Find out more about the RELAX study