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In conversation with: Lynne Sykes, Clinical Lecturer; Rachel Akers, Senior Research Midwife; and Malko Adan, Senior Research Midwife
Working within: Prematurity Research, Women’s Health Research Centre at Imperial Institute of Reproductive & Developmental Biology
What did you do?
We held face-to-face meetings with patients who took part in our preterm research project meetings to garner acceptability and opinions for new research techniques. We chose this method because it allowed our patients to share their experiences with others and catch up with the research team, who they saw for a large amount of time during their pregnancy. It also allowed us to physically show patients the sample collection techniques we planned to use, which can be difficult to explain remotely.
What were you trying to achieve?
We hoped that the Patient and Public Involvement (PPI) group would add greater insight into how we could incorporate different sampling techniques into our current clinic by giving us patient opinions on timings, where samples would be taken and by what level of clinician.
We also set out to record a series of video blogs to be used on social media, Imperial College websites, and teaching/training sessions, in order to promote the benefits of having a patient and public involvement group-research group collaborative.
As our research is pregnancy-related, we also hoped that the group would encourage engagement in research in future pregnancies to develop the ethos of the whole family being part of research studies in the NHS.
Who did you involve and how did you find the right people?
We already had core members of the PPI group, which we established three years ago. However, as time moves on, and babies grow up, we find ourselves with a naturallry dynamic and transient group. Therefore we also approach women who are several months postnatal, had been seen in our preterm birth clinic and had participated in a research project. Before we discharge the women from our clinic during pregnancy, we ask for their permission to add their details to our PPI list and whether they would be happy to be invited to an event in the future.
Were the people you involved given any training?
We invited researchers interested in PPI to observe a meeting before taking an active role in facilitating. Those facilitating the PPI group were all researchers within the prematurity field (e.g. doctors, midwives or scientists). Many facilitators took advantage of PPI study days offered by the college or by the NIHR.
Did you achieve what you set out to do?
We gained a good insight into the acceptability of the use of vaginal swabs and soft cup/mooncup (menstrual cups) for sample collection during pregnancy and how best to collect these samples within the clinical area. Involving the public helped us to write our protocol for a substantial amendment to existing ethics and a patient information leaflet for a new research study, which has now been approved by the ethics committee. We also have created a series of short videos to be shared with the wider research community, an example of which is here:
What impact did the Public Involvement and/or Engagement have on the people?
The women who took part in the PPI group found it helpful to be able to share their experiences with others who could directly relate to them.
The researchers gained insight into how our preterm birth research clinic helped women during their pregnancies. We found it helpful to understand the direct impact their actions could have upon a person’s journey through their pregnancy.
What was the most challenging part of doing public involvement and how did you overcome it?
The main challenge with our PPI group was that many members of the group were their children’s primary carer. Due to this, initially organising a time and day to suit everyone could be challenging.
We have now adapted to this and offer electronic copies of paperwork to be reviewed so that some aspects of the PPI work can be done at home and not face to face. We offer weekend meetings so that group members’ partners are more likely to be able to look after children when the PPI meetings occur and have altered the timings of the meetings to coincide with a mealtime for children if children need to attend.
What advice would you give others interested in doing something like this?
Start engaging and it will be clear how impactful PPI groups can be on your research!
We would like the PPI group to also help with the teaching and training of hospital staff and pure scientists that are involved in research. This would help both sides to appreciate the importance and relevance of the research, how precious samples are, and how best to recruit and collect samples.
Our PPI group are now ingrained as core members of our research team and will always play a role in research dissemination and promoting our new Imperial College March of Dimes prematurity research centre.