Women & Whānau

Welcome to our Women & Whānau area. In addition to introducing you to our Forum for Women & Whānau, here we provide information about clinical trials - what they are and why they are important. We provide participant stories, where you can read what mothers and parents had to say about participating in clinical trials research. We also tell you about ways you can become involved with clinical trials research.

Forum for Women & Whānau

This Forum was established in 2019. It aims to provide an accessible space for women and whānau to interact, comment and engage with clinical trials research and the Network’s activities. It aims to have a wide, diverse and inclusive membership reflective of the backgrounds, experience, ethnicity and geography of New Zealanders. It is open to everyone.

The Forum allows mothers and parents to share stories about clinical trials experience; provides information about the value of participation in clinical trials; information about current clinical trials; results of recent clinical trials; and offers opportunities for everyone to contribute to Network activities such as research prioritisation and trial development workshops.

The Forum operates via a Facebook page - we would love to see you there. We also publish quarterly newsletters that are made available across New Zealand hospitals in waiting rooms and whānau rooms.

What are clinical trials?

Clinical trials are research studies involving people who use healthcare services, which compare a new or different type of treatment, or new method of care, with the best treatment or care currently available. They test whether the new or different treatment is safe, effective and any better than what already exists. No matter how promising a new treatment may appear during tests in a laboratory or in a small study, it must go through clinical trials before its benefits and risks can really be known.

Clinical trials that take place in New Zealand for mothers and babies have all been approved on the basis that they are safe. Any care provided in a clinical trial will be at least as good as standard care.

Why are clinical trials important for mothers and babies?

Clinical trials recruiting pregnant women and babies are important as they facilitate continual improvements in the care provided to mothers and babies.

Clinical trials provide evidence to inform us of the best care that should be provided. The more clinical trials available for New Zealand mothers and babies, the better and more consistent care that midwives, nurses and doctors can provide to New Zealand mothers and babies.

For participants, clinical trials are beneficial in a number of ways. For example:

  • Often, the treatment being tested is not available any other way than as part of a clinical trial. So, clinical trials provide more choice of care.
  • Being part of a clinical trial can be highly rewarding and having the support of a clinical trials team who are guiding you and observing your participation can be a great motivation.
  • Clinical trials require comprehensive care. Although current care is of a high standard, researchers looking after you in a clinical trial are particularly attentive!
  • There is evidence that those who participate in clinical trials have better general outcomes than those who don’t participate.

  • Read more on the importance of clinical trials

    Hospitals running clinical trials develop their infrastructure and resources, as well as investing in staff development. Research-active hospitals can attract and retain high-performing clinicians and scientists who are actively involved in creating a continuously improving healthcare system - providing better care to their patients.

    Research-active hospitals gain access to new therapies and techniques to provide consistent, best-practice care.  For example, hospitals involved in the HYPITAT trial in the Netherlands provided improved care for pregnant women with better maternal health outcomes compared with hospitals that did not participate in the trial. By investing in clinical trials research, hospitals and healthcare providers are actively involved in generating and implementing high-quality evidence-based care in order to improve health outcomes for women and babies.

    Clinical trials can make considerable savings to our healthcare system. For every $1 spent on a good quality clinical trial there will be a return on economic benefit for society.  An Australian report looking into this identified a return of AU$5.80 for every $1 invested in clinical trials research.

    You might be thinking how is this the case, don’t clinical trials cost money? Well, yes, they do but clinical trials inform us of best clinical care and improve health outcomes. When our learnings from a clinical trial are implemented into practice, health care becomes better and more efficient. Better health outcomes for patients and more efficient clinical care lead to savings in health service costs. By investing in and supporting good-quality clinical trials research in New Zealand, New Zealand mothers and babies will benefit from improved health outcomes and contribute to making healthcare more cost effective.

    Clinical trials investigating the best treatments for mothers and babies are really valuable to New Zealand as a nation. As a nation of innovators, New Zealanders researching better health for mothers and babies make a significant contribution to clinical trials research around the world. New Zealanders collaborate with researchers around the globe, all with a shared mission to improve health outcomes for mothers and babies. Consequently, New Zealanders have improved access to up-to-date high-quality evidence-based healthcare and therapies.

    Clinical trials research provides opportunities for New Zealand to develop a collaborative community of health researchers, healthcare consumers and clinicians who share experience, resources and infrastructure to continuously improve our healthcare system. By partnering with others around the world, clinical trials research in New Zealand can maximise potential health gains for women and babies in Aotearoa.

What clinical trials for pregnant women and babies are available in New Zealand?

There are a number of clinical trials actively recruiting pregnant women and babies across New Zealand. You may want to speak with your healthcare provider to see if they are aware of any trials that may be suitable for you or your baby.

Clinical trials promoted and supported by the ON TRACK Network are trials led by clinicians and academic researchers (i.e. non pharmaceutical sponsored) that are recruiting participants across multiple hospitals. If you are interested in finding what clinical trials are supported by the ON TRACK Network take a look at our clinical trials page.

Another useful place to look is the Australian New Zealand Clinical Trials Registry (ANZCTR), an online registry of clinical trials being undertaken in New Zealand and Australia. All clinical trials are registered with a registry such as ANZCTR and you can use the search function to find clinical trials using key words.

We also feature New Zealand multicentre clinical trials recruiting pregnant women and babies in our regular newsletters.

Other ways to get involved

Influence what research takes place in New Zealand

One of the ways to get involved with the ON TRACK Network is to take part in our Research Prioritisation Project. Research tells us how to best provide healthcare and how to deal with complications or illness. This is also true for women's and babies health during pregnancy, at birth and postnatally. Until recently researchers and funders decided what research was done but are they really the only people to decide? New ways have been developed to seek opinion from a much wider group, and to use tools that help to weigh different criteria depending on their importance, for example, equity and burden of disease. This prioritisation of research helps us to use our limited resources to get the best health benefits for the population, i.e. it tells us where we should be focusing our efforts and money.

The ON TRACK Network Research Prioritisation team have looked at the many different methods of research prioritisation and developed one specifically for New Zealand and our mothers and babies health. One of the key features is the inclusion of women, parents, caregivers and whānau in the process. We believe that YOU are in a very strong position to identify what future research questions we need to ask. If you would like to become involved, please contact us.
Enhance clinical trials design, development and completion

The ON TRACK Network hosts an annual clinical trial development workshop that supports the development of promising trial ideas into active clinical trials recruiting mothers and babies from across New Zealand hospitals. You are in a great position as a mum or a parent to advise if the proposed trials answer the questions we have. For example, are they acceptable for women, their babies and whānau? Are they feasible and achievable in New Zealand? If you would like to become involved with these workshops please contact us.

Share your experience

We like to share clinical trials experiences to encourage greater involvement by participants and to be able to offer more clinical trials to New Zealand mums and babies. If you or your baby have been involved in a clinical trial in New Zealand, why not share your story? Tell us about your experience - you can submit your story here. We would love to feature it in our Forum for Women & Whānau, here on our website and in one of our newsletters.
Help transform new research into better clinical care

We can work together to ask healthcare providers about the treatment options being offered to you and your whānau, and if there is any current research that may potentially offer better treatment options. You can influence development of new guidelines helping to turn clinical trials research into better, more consistent clinical care. If you would like to become involved with guideline development please contact us.
Kathleen

Read what participants had to say about their experiences of participating in clinical trials research during pregnancy

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