How women with experience of miscarriage helped shape and design my research

In conversation with: Dr Bijal Patel, Diabetes and Endocrinology Research Registrar, Department of Metabolism, Digestion and Reproduction, Imperial College London

 

Project Details

My research aims to improve the diagnosis of miscarriage. Miscarriage currently takes several weeks to diagnose, resulting in significant psychological trauma for women and their families.

Levels of a hormone produced by the placenta, called ‘kisspeptin’, can be used to estimate the risk of miscarriage with a high degree of accuracy. The current method to measure kisspeptin levels in the blood takes several days to provide results and cannot be easily conducted in other centres. Therefore, my project aims to develop a new method that can accurately measure kisspeptin levels and thus enable the use of this blood test in the assessment of women with possible miscarriage across the NHS.

 

What did you do?

I developed an online survey with the help of the Imperial Patient Experience Research Centre to help identify and recruit women with lived experience of miscarriage who were in a position to provide the patient and public’s perspective of the proposed research. I received eleven responses from a diverse group of women who were very interested in being involved in helping to shape my research plan. I invited seven women with lived experience of miscarriage to attend a virtual focus group meeting which I chaired alongside our local Imperial PPI Champion (Deborah Papadopoulou). The purpose of my focus group was to explore the relevance and value of my research to patients and the wider public and whether the design of the research could be improved to better address the patients’ research priorities and needs. Specifically, I wanted to establish what they felt was the most difficult part of dealing with a potential miscarriage and to ascertain how my research could help improve the diagnostic process.

I also obtained feedback on the legibility of my lay summary to ensure that it was clear, well-structured and to ensure that I had avoided any unnecessary jargon. I plan to incorporate PPI throughout the conduct of my research and this activity also enabled me to identify individuals who were willing to participate in further involvement opportunities and support my research in the future if funded.

 

Who did you involve and how did you find them?

I advertised the opportunity to be involved through an online survey which was shared via social media and through the Imperial Patient Experience Research Centre public invovlement networks. I also contacted charities including Miscarriage Association and Wellbeing for Women who advertised my research via Twitter and engaged with other relevant stakeholders including the researchers at my local early pregnancy unit. Using multiple channels to advertise my involvement opportunity enabled me to recruit a diverse group of individuals with experience relevant to my project to attend my focus group meeting to guide my research.

Hearing first-hand experiences of women affected by miscarriage was very powerful and left a lasting impact on me,  motivating me to pursue the research to improve their care. The focus group members affirmed to me that the research question was important to patients and that it could make real difference to miscarriage care, which was very satisfying and inspiring to hear.

One woman stated:

‘Having a miscarriage can be traumatic and the emotional pain felt years on. Despite having two beautiful children since then, there remains a sense of emptiness.

I was not prepared at all, both physically, or mentally.

If I can support and advocate for those who have experienced something similar, and better prepare women in the future, I would be happy to do so.’

 

Were the people you involved given any training?

I chaired my focus group meeting supported by a Patient and Public Involvement (PPI) Champion, which was very helpful. She explained the importance of PPI in research and helped guide the group through the session. We were very careful to ensure that people were heard, had the opportunity and were made to feel comfortable to speak, but also did not feel pressured to do so if they did not wish to especially as we were dealing with a very sensitive and emotive topic of miscarriage. We ensured that people involved had a clear understanding of what was expected of them and the ground rules of the meeting. We did not provide formal training for this first session, however at the beginning of the focus group attendees were given an overview of the project and had the opportunity to ask any questions. As we were most interested in hearing patients first hand experiences to help shape and influence our research this didn’t require any formal training. We will certainly make use of the various PPI training resources from Imperial PERC available for future involvement activities.

 

Did you achieve what you set out to do?

My involvement activities thus far have been a fantastic opportunity for me to gain insight into the value and relevance of my research project from patients and the wider public. I was able to confirm that my research topic and design were in line with patient and public priorities. The majority of the patients involved identified that the most difficult part of dealing with a potential miscarriage was the uncertainty and waiting, and all reported that it was very important to study the use of kisspeptin in the diagnosis of miscarriage to help reduce this distress.

They also reviewed and fed back on my lay summary and advised it was clear but suggested replacing certain words to make it easier for members of the public to understand. Furthermore, they confirmed that my research was ‘of high priority and value for money’ and that it was ‘relevant for all those wanting to start or grow their families’. Most participants reported that this research will be ‘crucial’ in supporting women and families. They helpfully suggested that ‘healthcare staff who would be looking after a woman with miscarriage should be involved in the future, especially midwives and psychologists.’ Their suggestions and feedback have now been incorporated within my research design and funding application and they all also expressed an interest in being involved in future engagement opportunities and will be willing to support the research moving forwards.

 

What impact did the Public Involvement activity have on your research and those involved?

My patient and public involvement activities have had a positive impact on my research project as it has confirmed the clinical need in that many women experience significant psychological distress with the current investigation of miscarriage and that a new method to improve this is of high clinical priority. The women developed a greater understanding of miscarriage research and felt valued and listened to. Importantly, it highlighted that a ‘kisspeptin’ blood test which accurately determines the risk of miscarriage could transform the care that pregnant women receive within the NHS.

 

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

One of the main challenges was trying to reach individuals who would be interested in undertaking a PPI activity related to a very sensitive topic such as miscarriage, especially during the COVID-19 pandemic. In order to tackle this, I transitioned my PPI focus group from what would normally have been an in-person event to an online format, which possibly may have made the activity more accessible for some participants. I advertised my research through my Twitter account and approached several charities involved in miscarriage care such as ‘Miscarriage Association’ and ‘Wellbeing for Women’, who re-tweeted my message. I also contacted my local early pregnancy unit and liaised with an Obstetrician and Psychologist who identified women with lived experience of miscarriage who may be willing to attend my focus group meeting. Although a virtual meeting was mandated due to the pandemic, this format also had its advantages, as it provided more flexibility, enabled women to be in the comfort of their home environment, and allowed me to include women from other countries. Additionally, I was awarded a £350 grant from the NIHR Research Design Service London Enabling Involvement Fund which enabled me to compensate the members in my focus group for their time.

 

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

Patient and public involvement is essential throughout your research project as it provides invaluable insight on the relevance of your work and enables you to form aims and objectives that align with patient’s research needs. I would advise other researchers to undertake involvement activities from the initial planning and designing stages of the research cycle to identify and address issues early on and ensure that your project is steered in the right direction. This was my first experience of patient and public involvement and I found collaborating with my local PPI team extremely beneficial as they gave me great support and guidance on the process. In addition to providing a strong foundation for your research, PPI is very rewarding and satisfying on a personal level and is a process that I thoroughly enjoyed.

 

So, what’s next?

I will continue to liaise with the PERC team and use their public involvement resource hub throughout my project for public involvement training, advice and support. My next plan is to form a study steering group, which will meet regularly in order to review and advise on my research, and I will also offer them formal training on how to incorporate the new ‘kisspeptin’ blood test into the current NHS clinical pathway for miscarriage assessment. Patient and public steering group members will also be invited to co-present at conferences and public facing events such as the ‘Imperial Festival’ to facilitate dissemination of my findings. Furthermore, I presented my PPI activities to my local research team and they were very impressed with the results and the success of it, and this has inspired them to also undertake PPI in their current research studies.

 

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