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GenV: Whole-of-population research on the maternity ward

by Simone Quinton,

GenV Senior Area Manager for Western Victoria

 

In January 2021 after a 30+ year career as a nurse and a midwife. I decided to join the Generation Victoria (GenV) research project as an Area Manager.

Led by the Murdoch Children’s Research Institute, GenV is one of the world’s largest-ever birth and parent cohort studies. The opt-in project will follow babies and their parents to help solve problems like asthma, food allergies, obesity and mental illness -mostly using data that is already routinely collected.

Critically for a project like GenV, our field team works closely with health services. Over two years from 2021 -2023, around 150,000 children born in Victoria and their parents will have the opportunity to participate in the project.

 

These families are being invited to take part in the project via maternity wards in Melbourne and via maternity services across regional and rural Victoria.

Nurses and midwives, as the largest healthcare profession, are crucial in transforming health care and health systems. GenV employs around 50 highly experienced nurses and midwives in its field team. Our background in midwifery care and extensive experience in clinical settings ensures GenV remains low-burden for staff, while ensuring new families are invited to be a part of GenV in an informed and personal way.

So, what exactly are the GenV field team doing on maternity wards daily across Victoria? We aim to provide information about GenV to all parents during pregnancy, with our partnering hospitals helping to distribute GenV information via antenatal packs and via in-hospital communication materials such as posters and banners. In addition. our ongoing broader awareness campaign comprising of digital. Outdoor and TV advertising gives parents the opportunity and time to learn and ask questions about GenV before their baby is born.

Following birth and prior to discharge, a GenV team member will visit families with newborn babies to explain GenV, go through the important information about what taking part involves, and answer any questions. Our field team work closely with maternity ward staff to check the appropriate time to approach individual families.

If the family decides to join GenV during this visit, parents sign a consent form to take part in all. or only some of GenV, with consent covering the birth parent and child. GenV is open to all babies and their parents -mothers, fathers, other parents and guardians. Without partners, we only have part of the research picture, so involving them is a priority for the project.

When a family agrees to take part in GenV, we collect some information and swabs from the baby and consenting parents in the hospital. and then as the child grows up. Then, with permission, we add information and samples already collected by other services.

lf we miss families in the hospital. families across Victoria can contact us to take part later, and we also are implementing a virtual recruitment model to ensure we are inviting all eligible families across the state to join GenV. We also invite families to join GenV in languages other than English, with GenV information currently translated into five different languages with more to come.

Our early results are promising. As of March 2022, more than 10.000 families have joined GenV at maternity hospitals across the state, with more than 31,000 participants in total (babies and their parents). We expect this figure will grow exponentially over the next two years and eventually the data from this large cohort will help researchers find solutions to common child and adult health and wellbeing problems.

In addition. GenV will provide a platform for services, analysts and researchers to investigate issues that matter to hospitals and health services. This data could shape strategies to improve outcomes.

 

As a health professional who is passionate about involving parents in their own care in the maternity setting, I have enjoyed the opportunity to expand my focus in the clinical setting to a large whole-of-population research project.

Previously, I was involved in developing the ‘Know my Midwife’ program at Frances Perry House. In my experience, creating and nurturing relationships between families in medical research is a natural extension of this approach to maternity care.

I believe that GenV’s importance really lies in the long-term benefits of the resulting research. As a parent of an adult daughter with a chromosomal abnormality and congenital cardiac condition, I have seen over the years how research has evolved medical care in this area of health.

GenV could change the way we approach maternal and child health care, and this is something I am proud and excited to be a part of.

First published in Australian Midwifery News, publication of the Australian College of Midwives