MuM-PreDiCT’s Patient and Public Involvement & Engagement (PI&E) Advisory Group has been with us from the very beginning of our journey. To date, we have had seven meetings with the PI&E Advisory Group, and they have been invaluable in advising on all aspects of MuM-PreDiCT, starting with the £3m collaborative grant proposal, to the study design of our work packages, our recruitment strategy and the interpretation of our study findings.
One aspect of PI&E which isn’t talked about so much is how PI&E members influence our development and practice as individual researchers, as well as the conduct of a study. So here is my experience of working with the MuM-PreDiCT advisory group.
Active involvement in meetings
By attending PI&E meetings led by our PI&E lead, Rachel Plachcinski, I have learned some good practice for hosting meetings. Firstly, Rachel always has some fun ice breaking questions, such as ‘What is your favourite Easter egg chocolate’. I later incorporated this into my focus group with pregnant women with two or more long-term health conditions. This meant they did not have to share their medical history with the group if they did not feel comfortable doing so.
During the PI&E meetings, which are held online via Zoom, I found I struggled to juggle between following the conversation, formulating my thoughts on my response, and following the comments in the chat box. Reflecting on this, when conducting focus groups, I had designated colleagues who would follow up on the chat comments. We also had a designated person who would check in with participants and offer support after they discussed distressing experience.
I learned from PI&E members’ experience that it is important to acknowledge their input, especially when they have so graciously shared very personal stories. I also learned that the research meetings can be intimidating, especially for new members. Rachel, our PI&E lead, ensures that I prepare the relevant documents and share them with the PI&E members in advance. For workshops, I have prepared separate versions in Plain English to explain any medical jargon. I aim to follow the example set by my senior research colleagues, who always seek the thoughts and experiences of PI&E members in these meetings.
Learning new skills and approach
I have also learned new skills from MuM-PreDiCT PI&E members. I happily admit I am quite a dinosaur when it comes to information technology. It was PI&E co-investigator Ngawai Moss who introduced me to Canva for graphic design. I secretly try to learn a trick or two on how to make an engaging Twitter post by referring to @ngawai_n ’s Tweets. I also tried my hands on Miro board after PI&E member Sara introduced me to it. Working with patient charities to recruit for my focus groups, I learned the power and reach of Instagram. Our PI&E members have also provided helpful guidance on the sites that new mothers would frequent, such as Facebook groups for home schooling activities and meal plans for families.
Sensitive and clear wording
MuM-PreDiCT’s PI&E Advisory Group always comes to the rescue when I need advice on wording for research documents, such as study posters, participant information sheets, surveys, manuscripts (and this blog post!). They coined the phrase ‘2 or more long-term health conditions’. They would happily cover my documents in red tracked changes to make it read better. Their feedback made me much more aware of the impact words can have.
Pilot test
The MuM-PreDiCT PI&E Advisory Group was also a safe place for me to test out my approach to conducting my focus group, exploring outcomes that should be included in the Core Outcome Set for pregnant women with 2 or more long-term conditions. The exercise meant that I recognised the shortcoming of my approach. I was able to reframe and simplify my question to stimulate a productive discussion on outcomes, rather than possible solutions to bad experiences. This meant that I could get the most out of the focus groups to meet the research objective. The PI&E members have also pilot tested my Delphi survey for the Core Outcome Set development and I am very excited to share the live survey here!
Thank you!
So I want to say a big thank you to our lovely MuM-PreDiCT PI&E. Advisory Group. I have personally learned a lot from the group and I hope we can do you proud with our research work.
Prepared by Ing Lee, Rachel Plachcinski, Ngawai Moss, and Megha Singh.
Ing happiest when eating cakes.
Resources for PPI&E suggested by Rachel:
- Greenhalgh et al (2019): Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot.
- Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research in the International Journal of Population Data Science. A really useful resource acknowledging the difference in PPI&E for data intensive research.
- GRIPP2 reporting checklists are really helpful to get you thinking through planning for PPI&E and the key info you need to capture for future reporting.
- Listening Series film and written guide by Policy Research Unit at NPEU, Oxford, to reaching groups who are under represented in health research