Elin Haf Davies is currently Scientific Administrator for the Paediatric Medicines Development and Evaluation section of European Medicines Agency (EMA) www.ema.europa.eu/ema/
Elin has worked in consultation with all of the GRiP Work Package teams, advising on regulatory aspects of their deliverables and tasks.
Elin has led an eventful life professionally, but also personally with the epic adventures and challenges she undertaken. She shared some of these experiences along with hopes for the future during an interview for GRiP with Barbara Richards.
Can you give some information on the background of your career and how you got to where you are now?
As a child I always knew I would go on to be a children’s nurse because my Mum was a nurse. I started off by travelling to Lesotho in South Africa to work for Save the Children in an orphanage. After that I came to London to do my nurse training at Great Ormond Street Hospital (GOSH). There, I worked mainly in neuroscience, neurology and neurosurgery and I completed my degree in Neuroscience during that time. I then started working with Dr Ashok Vellodi (Consultant Metabolic Paediatrician, GOSH) in Metabolics, recruiting children into clinical trials. I completed my Masters in Research Methods and then had the opportunity to do a PhD, funded by pharmaceutical companies that were developing drugs in the area of my thesis. I was just predominantly lucky to be given this opportunity. The timing coincided with the Paediatric Regulations coming into force and I met Agnes Saint Raymond (Head of Human Medicines Special Areas, EMA) at a conference where she was presenting about the regulation and I was really quite excited about the prospect of influencing clinical trials before they reached children. So, for the last 6 years I have been working in the paediatric team at the European Medicines Agency.
You have certainly had more than your fair share of achievements already in your life, what is the one that you are most proud of, either professionally or an achievement in your personal life?
Professionally, it has to be my PhD really, I was never really interested in academia as a child or in school so I think it was a bit of a surprise to everyone all round that I carried on to study. Also I set up an “Aunty Elin Day” which was taking children with Gaucher disease out for 3 days a year for fun projects but also to give them the opportunity to talk about their disease, their worries and about what support they needed. The Aunty Elin Project was set up six and a half years ago, and even though I left it has carried on building from strength to strength and is now called the Aunty Project. Just seeing from those kids how much they appreciated the chance to be normal and to have a fun day out with children who had the same diseases as them. I’m just really pleased that it carried on despite the fact that I left, and that it is still gaining strength.
That is quite a legacy you have left behind there.
Well it is quite a nice thing and I am still in contact with some of the girls, patients I had looked after for years, and it is really sweet because they still call me Aunty Elin which it is lovely. One of them has grown up to be an incredibly talented young lady despite having a lot of problems and I have asked her to present at the DIA (www.diahome.org) Conference about her experiences of being in clinical trials. So, having cared for her on a clinical trial for four years I know she will do a brilliant job talking about her childhood experiences; it is a very proud moment for me.
“A woman of extreme courage and determination”
You raised £190,000 for Metabolic Research at Great Ormond Street Children’s Hospital with the first of your adventures, rowing across the Atlantic! Before you embarked on this, your first ocean rowing trip, you had never been to sea or even rowed before. What spurred you to take on such an epic adventure?
I had been playing rugby for 11 years of my life and had played at international level before I was dropped from the Welsh International Squad. This was at the same time as I got divorced so it was a pretty difficult and turbulent time in my life. I kind of joke and say that I couldn’t afford therapy at the time so decided to row across the Atlantic instead! It is true, I had never rowed before, never been out to sea before and didn’t have £63,000 to pay for the campaign but never underestimate a woman on a mission, right?
There must have been very frightening events happening, how did you overcome these and any fears you had at the time?
Definitely, people can relate to the physical challenges about being out at sea but it is also the psychological, emotional challenges and will to just keep going that is hardest. Certainly for me, we had been supported by so many people just to make it possible to get to the start line and it never felt that we were alone out there. So while there were some really frightening moments I just knew I had to carry on for all the people that had supported us and certainly the children and families we were raising the money for, they had really got behind the campaign so it was important to carry on for them.
You say that there were times when you felt you simply couldn’t go on, so how did you find the strength to keep to such an arduous programme, in particular the 12 hours rowing a day?
Whenever I felt quite low I just had to kick myself and remind myself that I chose to do that, I chose to put myself in that situation so it was no point moaning about it. Also, acknowledging that these kids they didn’t choose to be born with these diseases, they don’t choose to live every day with the devastating effect of their diseases and yet they are able to battle on and be consistently happy, determined and optimistic and able to overcome the odds they face. So, having experienced seeing that from the children and their families gives you a real perspective of life and what we moan and groan about.
Do you draw inspiration from the children you meet with your research work?
Certainly now at the EMA, whenever I evaluate a Paediatric Investigation Plan (PIP) and the clinical trial proposed for the children, the first thing I do is I think of the children that I looked after for those five years when I was doing clinical trials and consider would those children be able to do those clinical trials. Would they have been able to do those tests, tolerate the length of the assessment, and take the medicine? Having had the real life experience keeps it very real and grounded to me when I do my day to day job in front of the computer screen now. I still feel it is the best foundation ever and I think anybody that assesses clinical trials should have experience of working with children to know what is feasible and what is possible.
Who was the person who has most influenced you, and how?
I can’t name just one person, I think because of the career I am now in, after the clinical nursing days and because of the adventures I have done there are actually very few female role models out there. So, I do get inspired by Dame Ellen McArthur and Sam Davies on the adventuring front as the kind of women who have really succeeded in a male dominated world. Also in science and research women are still quite few and far between so it is good to find women as role models in high profile positions.
“How can she have done so much and be so young?'
What are your other interests outside of work?
Just like everybody else I like to read good books or even trashy novels, watch films and eat a lot of chocolate. Because I am away a lot with my adventures and work it is really nice to be at home and catch up with what my friends and family are doing, I go home to Wales quite a lot.
What do you think is the biggest challenge in paediatric drug development?
In the therapeutic area I specialised in, very rare metabolic disorders, it is really hard to raise awareness and to conduct research in these particularly rare disorders, for many different reasons; because they mainly present in children so many adults are not aware of them, especially as the numbers are few and far between; and there are specific scientific challenges also. Obviously the economic aspect of getting funding is challenging for all, and it will be increasingly difficult for paediatrics to have a voice amongst all the other competing needs in healthcare today.
What are the most important goals you realistically hope to achieve with your work?
I’d love to go on and really support research and drug development in rare paediatric disorders, and use my adventure platform to raise awareness, while using my experience of raising money to help get this much needed research and science up and running. Hopefully before I retire I can support many successful stories of drug development from bench to bedside.
Do you have any advice for people who would like to find out more or to get involved in children’s medicines research?
For me it is very much about remembering why we are in it and not getting lost in the detail along the way. We always need the professionals from all the different clinical, scientific and regulatory backgrounds and through this collaboration and by understanding everyone’s view point we will make progress, but we must always remember at the end of the day it is about getting the children’s needs addressed. I think anyone who has worked with kids directly benefits from that aspect when they go on to do research.
Where do you see your future within paediatric research and what’s next for Elin?
One experience over the last 6 years that I realised is that the Atlantic campaign was able to raise more awareness, more funding and understanding of the needs for metabolic disorders than my PhD, for example, would ever achieve. I am quite keen now to go and use my adventuring platform, the Atlantic and the Indian Oceans crossings, and my sponsorship and fund raising success to really raise awareness of what is needed and to work a lot with different stakeholders so we can invest money into the right campaigns and initiatives to drive forward what is needed now.
There is a real wealth of experience and knowledge already out there, and I would really love to be part of a project taking paediatric research forward and utilising, not just my professional skills in nursing and regulatory affairs, but also my adventures platform. It surprises me all the time but it really has given a voice to raise awareness, so I am hopeful I can go on now to use that as a powerful tool to convey some messages.
Another achievement I am hoping for is after working for the last few years with GRiP’s ambitions and aspirations of the work packages I believe there is a lot that can be done to take this forward and I really hope I can continue to work with GRiP’s progress over the forthcoming years to serve the clinicians and academics taking paediatric research forward.
If you would like some more information about Elin’s work, publications and her areas of expertise please visit her website at: www.elinhafdavies.co.uk/ where you can also get an insight into her adventures across the oceans. Elin has also written about her adventures in her book “On Tempestuous Seas……Rowing Two Oceans” which is available in both English and Welsh language versions at www.gwales.com