Why is it important continue to fund research and grow evidence?
Pregnancy, well, women’s health generally, is seriously underfunded. For every £1 spent on maternity care, only 1p is spent on research. Compare that to heart disease at 7p or cancer at 13p.
Pregnancy is the setting up of future generations. Professor Graham Burton at Cambridge said there is a ‘100 year lag’: if you invest in the good care of a mother or pregnant person during their pregnancy, it is that baby that will set up the next generation. The money that we invest in women's health – preconception, conception, being healthy in pregnancy - is absolutely going to reap benefits for the next 100 years.
We have to wake up to this reality. If we don't invest now in family health, pregnancy health, we are going to have a very unfit population in the next 100 years.
What should good research look like?
Firstly, it’s thinking about the people that you want to help and asking them: what do you think is important? Because it isn't necessarily what the healthcare professionals or scientists think is important. It’s thinking about where they are in their lives, and what do they rank as their priorities.
For preterm birth, the number one research question that we identified as part of a James Lind Alliance Priority Setting Partnership was prediction and prevention of preterm birth. That was way above all the other things that people want. Another area that patients wanted, which wasn't necessarily on healthcare professionals’ radar, was lifestyle changes that they might be able to make which could reduce their risk of preterm birth. It's so important to listen to the people who have the lived experience.
Research is not only about science, but it's about the implementation of findings. We're perhaps not quite as good as that! Implementation science really is a key part of the strategy for Tommy’s – you take research right the way through from the basic science. The basic science then generates a hypothesis. You can then test it out in populations and figure out, is this actually the cause of a problem? Or can we use this to predict something? Can we use it to prevent something? Develop a new treatment? And then how can we best implement those benefits into the population?
How can we get it to the people who need it the most? How can we identify who needs it the most and how can we get it to them? We’re very good at developing treatments but not quite so good as getting them through to the people who need them.
Why do you think Tommy’s has a unique role to play in growing evidence?
Tommy's is seen as a very approachable charity that is acting on behalf of patients. Having been a Tommy’s trustee as well as a researcher, I can say that the charity also holds scientists and healthcare professionals to account. There’s perhaps less focus on impact and implementation if you get a grant from somewhere else but Tommy’s hold us to account and says – okay, what’s your research done? What has it achieved?
Working with parents who have experience of the conditions that Tommy’s is trying to treat or prevent means that you've got a direct line to the people that really matter. Tommy’s pregnancy information and support line receives calls from parents so you know what’s important, what the questions are that need answering. If they keep asking things where you think, okay we need to know more about this, that’s where new research ideas develop. Tommy’s links the scientists, the healthcare professionals and the parents.
Do you think there’s more to learn and discover, or is it a case of better applying the research breakthroughs we’ve already made?
There’s HUGE amounts we still need to discover. Fetal growth restriction, where we have small babies, is a syndrome, not a diagnosis. There's all different types of fetal growth restriction, depending on whether it's early onset or later onset, associated with having a small baby, but it's not a diagnosis. Again a short cervix is a sign of threatened pre-term labour, not a diagnosis.
We need to move toward being far more like cancer researchers, where they have a particular genetic association with the condition. If you have breast cancer, you get a test that tells you you're positive for this gene, or negative for that, and then you get a tailored treatment. We should be able to do that for pregnancy.
There's a huge amount of research that we need to do, and we need to throw technology at it. That’s expensive, but it’s necessary.
What excites you most about the new Tommy’s strategy?
Tommy’s is really embracing inclusivity. Research has to be about everybody but equity means we need to prioritise particular populations or groups first, without saying that this is all we're going to do. The diversity and inclusivity approach is the way forward and it's not going to be easy, but it's about holding your hands up and saying, we need to be much more aware of this and it needs to be much more a part of our research.
There are certain groups that we know have a higher risk of preterm birth. Black woman come to my clinic with higher rates of preterm birth but we don't know why. I'm sure there are lots of reasons. We need to know them and we need to be able to do something about it. There’s a range of factors – environment, exposure, work, stresses they’re exposed to, genetic factors between different ethnic groups, we need to look at everything and try and understand it.
We also need to understand that different diseases have different manifestations in different populations and groups. We now know that there are normal ranges for kidney conditions that are different in Black populations than in White populations. We’ve been blinkered because of gender too. Much of adult medical research has only focused on men. So normal ranges for blood results, for example, are for the adult male who weighs 80kg. For a female, what if she’s pregnant and only weighs 65kg?
We need to embrace this and be very aware of who we’re researching, the potential differences, and how it impacts findings.