Subscribe Now

By entering these details you are signing up to receive our newsletter.

Helen Springford of Illingworth Research Group

With a background in both business development and nursing, the CEO of Illingworth Research Group, Helen Springford​, brings to the role a strong desire to help and support patients. She talks to RARE Revolution about what motivates her, and about her firm belief in encouraging her staff to reach their full potential

CEO Series: meeting the beating hearts behind the RARE brands


What made you want to move into the wide world of rare disease, and then specifically Illingworth and what did that journey look like?

​It was joining Illingworth which led me to being involved in rare disease clinical trials. I wanted to join Illingworth as I was keen to get back to a role where I could have a more direct impact on the lives of patients and their families. I have always been more interested in trials seeing it from the patient’s point of view than what the molecule did and how it performed. After over 20 years in project management and business development roles, having started my career as a nurse and working as a clinical trials co-ordinator in hospital, I felt I was going back to my roots taking the position with Illingworth.

Helen speaking at the MENA launch in Cairo


What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?

The good news is that, at last, the message surrounding the need for more patient focused trials appears to be spreading and gaining support within the pharma industry. This clearly is a great chance for Illingworth to promote what we have been doing for over 21 years now and to knock on doors which are more ajar than they were in previous times.

The biggest challenge will be growing competition. With the term patient centricity used often now, many companies are considering either acquiring or growing their own mobile research nursing service organically. Although I do not believe that this will have a detrimental impact to Illingworth in the short term (after all, it is not easy to match a company who has over two decades of experience in this field and who has grown organically over that time), I do envisage over time we will have more direct competition for work. However, I do not believe over two years we will see a huge change. 


What is your proudest moment in your career thus far?

I have many. I will point out two which spring to mind. The first one is keeping in touch with the very first transplant patient that I prepared for theatre when I worked in a heart transplant unit in Melbourne, Australia when I was nursing. Unfortunately, the patient passed away a few years ago but I was fortunate enough to meet up with him and his wife several times over the last 29 years. The last time I met his wife and daughter was in 2017, when I went over to Australia on business and was told how much they still thought of me and what I had done for the family as a whole. That summarises for me why I went into nursing and why I love what I do now to make the lives of patients and families with rare diseases easier.  

A more general moment would be seeing junior members of staff grow and develop their careers. I firmly believe in the importance of encouraging and training staff so that, in turn, they can enjoy fabulous careers of their own. 


What and who are your personal and professional inspirations and why?

My goals, not unsurprisingly, have changed over the years. I am much more motivated by a role I enjoy and that allows me to continue to help patients than anything else now. I am inspired by those who follow their dreams and live the life they want to life, rather than the life they think people expect of them. Individuals who have passion for what they do and stick to their principals inspire me. I have been accused in the past of not being a yes man and I am proud of that. Those who stand up for what they believe is right, even if it is unpopular, impresses me.

I am also hugely inspired by individuals who have rare diseases and the amazing resilience they show.  


What advice would you give someone considering working in the rare disease space?

Do it! It can be difficult to hear some of the stories like families trying to get a diagnosis for their child or the general difficulties many face living with a rare illness. However, for me, the determination that they show and unending challenges they overcome is very special to witness and very humbling. 


Do you think the government does enough for the rare disease community at a local and central level, and what gaps do you see currently or emerging?

​I don’t feel knowledgeable enough to answer this question. 


What would you say are some of the biggest motivators for your employees?

​I would say that it is very similar to mine, in that they want to do the very best for patients and caregivers. Indeed, I would expand on that and say that they are driven by doing the best jobs they can do for everyone, including of course sponsors. I feel that we are lucky in that Illingworth is not a large company and, as a result, we maintain close communication with one another. During COVID-19, we have held, and are still doing so, online end of week drinks which has been very popular. Although a small thing, it allows people, irrespective of the level they are in the organisation to share their thoughts and offload. 


What are the toughest parts of being a CEO, and conversely what are the most rewarding? 

Having to have more of an oversight role rather than doing things yourself and delegating to others can be an alien concept to people like me! At times, you have to take decisions and make choices that are not always popular. However, I find by explaining the rationale behind your decisions can help others understand the thought process behind the actions you take. I am acutely aware that the direction I take the company in could have a negative impact on people and therefore any decisions I do take are not knee jerk and are always considered.

Being at the helm allows me to communicate to the whole organisation and during the COVID-19 lockdown, ensuring the staff are safe and well, both physically and mentally has been extremely important to me personally. Also, I love being able to facilitate staff development and help talent grow. 


What would be your one wish for Illingworth for the year ahead?

​Although COVID-19, and the lockdown as a result, has been devastating for many on multiple fronts, our service offering of a suite of patient focused solutions to aid recruitment and retention into clinical trials has meant that we have been more in demand than ever before. My hope is that the pharmaceutical industry will continue to embrace technology and services to reduce the patient burden, whether or not COVID-19 is around. This will, in turn have an ongoing positive impact on Illingworth’s growth and allow us to share our vision with a wider audience.  


If you weren’t CEO of Illingworth, what was Plan B?  What did your 10-year-old self want to do as a job?

​I consider myself very fortunate in that I always knew I wanted to do something medical. For me, being a nurse opens so many doors. I graduated 30 years ago and I still have three close friends who went to university with me. One is a lecturer, one a matron in paediatrics and one a midwife. I, on the other hand, decided to utilise the qualification to allow me to travel and then move into research. I almost trained as a surgeon’s assistant but stayed in clinical research, a move I do not regret. Life is far too short for those!

Helen Springford of Illingworth Research Group
Helen Springford of Illingworth Research Group
Helen Springford of Illingworth Research Group

To find out more about the work of Illingworth Research Group please visit;

Skip to content