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Maryse enrolled in a clinical trial through the Communauté Francaise pour la Recherche en Santé (CFRS). She hopes to contribute to the progress of research and finding a better treatment. Today, she tells us why she chose to participate in a clinical trial with the CFRS and what it’s like.  

“We need volunteers to improve treatments and make medicine move forward. It’s important that people participate. Even if the trial doesn’t work for me, it can for others, that’s what’s important” Maryse explains.  

Finding a relevant clinical trial 
Maryse was diagnosed with COPD over 10 years ago. “I have to do everything much more slowly. And obviously not live at 100 km/h. There are days when it is very complicated, and days when it is fine.” 

“I’m not the kind of person who is overwhelmed by illness, so I try not to take it so much into account. It’s true that sometimes it’s hard to breathe, but it’s been that way for a long time, so I know how to deal with it,” she adds.

Maryse explains how she was made aware of CFRS (James Lind Care’s French patient community),

 “I saw the questionnaires on Facebook and I believe we need volunteers so that medicine can move forward. I filled in the questionnaire and was contacted a short time later.”

 Maryse adds “I want to participate to help find medications that are much more suitable. Even if it doesn’t work for me, it may work for other people, and thus allow for better treatments in the future”.  

After completing the questionnaire, she was contacted by our research nurse. At the moment, she can’t start the clinical trial. Nevertheless, she explains that the CFRS and the hospital in charge of the clinical trial still provide her with support and guidance, which she particularly appreciates

“At the moment, I’m not part of the trial and yet they keep in touch with me. They call me, and they keep me informed.”    

A human touch 
Participating in research is a long and sometimes complex journey for the patient. At James Lind Care, we strive to keep this in mind, creating positive and transparent relationships with patients and offering them appropriate support and guidance.

Maryse shares her experience with our research nurse and says:  “The CFRS nurse who contacted me was very nice. She is a very good listener, kind and gentle. I especially liked that she took her time to explain what the research was about and ask me about my journey. She explained things very well.” 

Being close, understanding, and responsive to participants is paramount. Our research nurses understand this and make sure everything goes smoothly.  

“The first thing the CFRS nurse did when she got back from vacation was call me to see how things were going. Not everyone would do that.”  

“The support is excellent. I don’t know what more I could ask for, really.”  

Being well informed
The link formed between the patient and the CFRS research nurse also simplifies the contact and the relationship with the site in charge of the clinical trial. Indeed, our research nurses strive to inform participants in the best possible way and to discuss all important and relevant points.  

“The process is very straightforward. The nurse explained everything well, she gave me time to write down what I needed to do, and what I needed to ask for in order to put the file together. It was really simple.”  

The French research nurse remains in contact with Maryse. She is particularly attentive to the well-being of the patients and to creating a beneficial and reassuring dialogue with them. 

By developing patient communities, like the CFRS, we want to make sure that patients feel safe and guided throughout their journey in clinical research. It’s important for our research nurses to be able to talk and interact with patients, and to explain and inform all the details of the trial.

Written by Camille Pujol 

On the 1st of December 2022 Charlotte Qwist became the new CEO of James Lind Care. Charlotte has over twenty years of experience in clinical research and drug development, having worked in leading roles at companies such as Novartis or Takeda. In this Q&A you can get to know her and her goals for the company!

You’ve been at the company for almost two months now. What are your first impressions and insights about the company? 

An impression I had even before I joined was the energy and the dynamic. People are really into what we do at JLC – it’s under people’s skin. That’s the first thing that comes to mind. I’m impressed by what has been achieved by this company, especially during the last year.

Why did you decide to become a CEO at JLC? Is there something about the company you were drawn to? 

There’s a little anecdote about that, actually. About seven years ago I met with Torben, and when he presented MediCollect, which is what James Lind Care was called before. Back then, I was Head at the Clinical Operations department at Novartis for the Nordics. At that time, I had the impression that MediCollect was not a service that we would like to work with and implement. I told Torben that story when we first came in contact for the job, he said – I understand why, but a lot of things have happened here since then. I could see this when I was presented with the brief. It was so obvious to me how this company had developed. So, I was contacted by the executive search company in Copenhagen who presented me with the opportunity and then the dialogue started.

You’ve been in the Life Science industry for 20 years now. Why have you chosen the industry or what path led you to it? 

I have a master in pharmaceutical science and the first job I had was with clinical trials. For me, it’s about the purpose to contribute to the development of new medicines, new therapies, and new opportunities for patients in need. I’ve often thought about whether I could work in another industry and the answer is simply – no. I must be true to myself. I think what we are doing now at JLC has a nice touch as the supplier, in a way, for the segment. Especially the communities, which are a new thing for me. I can easily relate to it because the company’s purpose aligns with my personal purpose.

Is there something about the industry, in general, you’d like to change?

The public view of the industry, more so than the industry itself. I think it is changing, I’ve been seeing it over the past 5-10 years. When you are on the inside of the industry you see how the whole language including the corporate communication is all about patients. What is bothering me is that in society some people have a very different notion. It’s a pity since it’s an innovative industry that provides new medicines for people that are in need and – where would we be without that?

What are your hopes for JLC’s future – any changes or new projects you’d like to engage in? 

My hope and my vision that will be presented as part of the strategy is to continue the growth. The growth in terms of projects, the growth in terms of employees, and the growth in the more professional set-up. We will look into how we work together, and how we can further improve our internal processes and become an even more reliable partner for the Life Science Industry. My vision is that everyone connected to JLC and employed here share the same goal.

What do you think should be our primary focus in 2023? 

Growth. Growing our communities in terms of member numbers, growing our number of projects and as a result growing the revenues so that we can be a sustainable company.

Thank you for this nice interview. To conclude – why don’t you tell us what you do in your life outside of work?

I live with my husband and my three kids. I love gardening, that’s my place of meditation. I also do some yoga and even try some more hardcore training. At the moment, I’m also starting an executive MBA at the Henley Business School. That’s also a challenge I’m taking on. There’s a lot of synergies with the work here at JLC and the principles I’m learning.

Written by Wiktoria Grzybowska