This Q&A is part of a series of articles for Rare Disease Day exploring the work in which BRC-funded researchers are involved. You can find our other articles here.


Magdalena (Magda) Martinez Queipo is a Biomedical Research Centre-funded Clinical Research Nurse based at the St John’s Institute of Dermatology, Guy’s and St Thomas’. She is currently coordinating a large nationwide study investigating a very rare skin condition called Ichthyosis.

—-

Can you tell us a little bit about what a typical day is like for you?
The great thing about research is that there is no such thing as a typical day. As a study progresses the job changes, so you could be writing the patient information sheets, working out logistics, preparing for patient visits, or seeing patients clinically.

Towards the end of a study there’s always a lot of work to do to make sure the data is correct and complete, all the samples are where they are supposed to be, or reviewing data with the team to make sure its ready for publication.

With so much going on you have to be very organised and systematic and be good at prioritising what needs to be done first.

What inspired you to get involved in research?
I’ve always been a curious person. Even as a child I wanted to know how things worked or why things happened. When I was at university I had the opportunity to take part in some research with a professor and some classmates and I really enjoyed it. It gave me the confidence to organise my own solo questionnaire-based research project. I was so proud of what I had achieved that I actually presented it a national conference.

When I came to the UK my interest in research was put on hold as I gained clinical experience in an Intensive Care Unit (ICU). After a few years, I started doing some bank work in a private Clinical Research Organisation (CRO), which taught me the fundamentals of systematic and consistent data collection.

When a research nurse post was advertised here at Guy’s and St Thomas’ I jumped at the chance and applied. I was absolutely delighted when I got the job.

You’re studying for a Masters at the moment. Why did you decide to pursue further study and how do you find the time for that.
When I finished my nursing Diploma I was under the impression that I was done. How naive!

When I was in ICU I did the specialist course, which evolved into a BSc in Critical Care. Then I ended in research and I heard about the National Institute for Health Research Fellowships for Allied Health Professionals. By then I had questions of my own I wanted answers to.

I was lucky enough to be accepted on to the programme, which allowed me to undertake a one-year full time Masters in Clinical Research at the University of Manchester. It’s been an intense experience, but a fantastic opportunity.

What are the biggest challenges you face?
Currently my biggest challenge is setting boundaries between the job and the rest of my life. I am currently involved in a national rare disease project and have had to organise and visit multiple sites across the UK. It has posed some logistical challenges to be ready for a clinic at nine am on the other side of the country with a five year old at home in London. I do have an incredibly supportive partner who has filled in for me and made it possible.

How do you protect the safety of patients participating in trials trials?
Research has the potential for huge benefits but carries an inherent risk, which is why it is highly regulated.There is a whole system built around ensuring research is ethical and safe for patients. Research nurses are the last defence in that system, because they are the people on the ground in contact with the patient, advocating for them and making sure they are properly cared for.

Research nurses also ensure that what is approved to happen during a research study is what happens in reality. That is a really important job. It is not just as a safety issue. If research is carried out badly and gets published, other researchers and clinicians will follow in an incorrect path, so there are wider implications for future research and policy setting which ultimately affects all of society.

What are the most rewarding parts of your job?
The most rewarding part of the job for me is meeting our patients and knowing that our research has the power to change lives.

Research does not just affect those that participate in research, but also those around them. If patients get better and gain quality of life, the whole family gains in quality of life. If someone is able to improve, that has a ripple effect on all of society. And research that works in a particular domain can normally be applied to other areas. Research in rare diseases helps us to better understand non-rare diseases and has wider implications for all of us.

Finally, if there you were talk to a colleague at Guy’s and St Thomas’ thinking about getting involved in research – what would you say to them?
Go for it. If you see an unanswered question dare to ask it.

There are plenty of people in the Trust who you can ask and will help you understand what you need to have in place before you start. There are free drop in sessions from the Research Design Service who advise on methodology and grant writing. There are training courses in the Biomedical Research Centre to give you a basic understanding of quantitative and qualitative research or even of statistics. More importantly, you will meet people who are similarly inclined. Talk to them, pollinate and cross-contaminate ideas.

We are lucky enough to be attached to King’s College London who also run courses on all sorts of things from literature reviews and statistical software to bibliographic software and long documents on Word, which will make you more efficient in the whole process.

Start small and build on your experience. If in doubt, ask. Research is like riding a bike. You start and fall over a couple of times, but if you persist your bike can take you places.