Case study #7: Parents with experience of preterm birth help shape Imperial research

In conversation with: Dr Lynne Sykes, Academic Clinical Lecturer
Working within: Institute of Reproductive & Developmental Biology


What did you do?

With the help of the NIHR Imperial BRC PPI award, we were able to set up a Patient and Public Involvement (PPI) group to help shape our preterm birth research at Imperial. The funding enabled us to invite 10–15 participants to three PPI meetings over a course of 12 months. We now have an established group with around seven core members and one nominated representative. The meetings have been a great way to present, and get feedback, on our current and future research plans. Group members have also helped in constructing lay summaries for several (successful) grant applications, and input into the creation of a short video as part of a recent $5 million grant application.

What were you trying to achieve?

To create a core PPI group who meet with our research team three times a year to discuss current and future research projects. We hoped that the group would advise us on practicalities and feasibility of new proposed studies at the design stage. We also aimed to time meetings with grant applications in order to have support writing lay summaries. The other aim we had was for pure scientists in the lab to be able to engage with women in similar circumstances to women who our research aims to help.

Who did you involve and how did you find the right people?

Our PPI group consists of a combination of women who had been past patients in the high-risk preterm prevention clinic, partners of these women, women who attend the neonatal unit support group following a previous preterm labour, and scientists and clinicians from Imperial College London. Women and their partners were recruited either by direct invitation by letter, or in response to an advertisement on the Women’s Health Research Centre Facebook page, posters across the hospital and word of mouth.

Were the people you involved given any training?

Imperial staff involved in the group have been to several workshops and study days at Imperial College. I would recommend the workshops by Bec and Derek – they were fantastic and very inspirational!

Did you achieve what you set out to do?

We believe this PPI group has enriched our research programmes and created a bridge between pure scientists in the lab and women who may one day benefit from our research outcomes.

In the short-term, setting up the group has been a great achievement. It’s had a positive impact on our research group as the pure scientists have been able to engage with patients who have experienced preterm birth for the first time. The first meeting we held included a 10-minute talk from one of the clinical PhD students about her research results on new ways to screen women at risk of preterm labour. The questions from the PPI group were totally different to the questions we were used to being asked at scientific conferences. This was the first sense I got of how impactful the PPI group could be in the way we shape and think about the research we are doing.

Page one of our preterm prevention clinic brochure.

We also had support from the PPI group in writing lay summaries for grant applications, which were successful. This allowed us to continue to fund the PPI group for another year, since we allocated funding for the PPI group in the successful grant applications. We also created a brochure for current patients attending the preterm prevention clinic with the help of the PPI group. They were instrumental in wording the brochure for patients to understand, avoiding medical jargon.

The long-term impact is that we now have a core group willing to meet up and support the shaping of our ongoing research projects. We anticipate this core group will keep evolving as women drop out of the group to go back to work as their maternity leave ends, as they complete their family, and as their children grow up. However, we have learnt a lot about how to recruit women to participate in the PPI group, all thanks to the support of the NIHR Imperial BRC PPI award.

I can’t think of any negative points!

What impact did it have on the people involved?

The PPI group has enabled pure scientists to have contact with women and patients at risk of preterm labour. As clinicians, this contact and engagement is frequent and comes natural to us. Although our pure scientists don’t attend every meeting, they fully support and see the value in the PPI group.

The PPI group has also impacted on the research team by emphasising so clearly that patients and real women with real experiences are the reason why we are conducting our research. The PPI meetings have also helped us realise that the research we do relies on many team members with different roles, such as specialist research midwives, technicians, administration staff, as well as clinical and scientific doctors.

Our PPI community have fed-back that they were surprised at how much they have been able to help. Comments included feeling a sense of “giving back” to the hospital team in a productive way – i.e. knowing they may help prevent other women from going through the same experiences of pre-term birth that they did.

What was the most challenging part of doing PPI and how did you overcome it?

The most challenging part is arranging meetings for times that allows women and their partners from all backgrounds and experiences to be able to attend. We need to remain flexible with the possibility of having meetings in the evening or at the weekend in order to make it as easy for participants to be able to attend. We also had to think carefully about the timing of meetings and how much we would reimburse people, considering that participants often had to arrange childcare for their premature infants in order to be able to attend.

What advice would you give others interested in doing something like this?

Go for it! Patients are so enthusiastic, genuinely want to help, and see research from a totally different angle. They will contribute in ways you would not imagine possible!

So, what’s next?

We only have a limited amount of funding left for the PPI group, so we will be looking to apply for more funding to continue the group after May 2018.

 


If you’ve got a public involvement story you’d like to share, please get it touch.


 

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