Interview with WP6 leader: Loreto Carmona  

“One of my mottos is to make the world a better place. That is what drives me”

Just before the kick-off of the conference in Budapest, we interviewed Prof. Loreto Carmona, leader of work package 6, 'Context and Implementation'. In addition to her work for SPIDeRR, Carmona is the research director at the Instituto de Salud Musculoesquelética Musculoskeletal (Inmusc) in Madrid. Carmona: “I was trained as a rheumatologist but haven’t seen patients in many years — I only do research. Inmusc is a small company that researches and assists others in conducting research. We conduct a lot of clinical and qualitative research, and we were invited to handle the implementation part within the SPIDeRR project, which involves bringing all the basic science and other results into clinical practice”.

Laying the groundwork

Work package 6 is pivotal for laying the groundwork for implementing all outputs from the SPIDeRR project by understanding the context in which they will be deployed. “Its primary objective is to understand the healthcare system environment where the tools will be deployed and to assess their acceptability. This includes determining whether people with musculoskeletal complaints will use them and whether family doctors and rheumatology clinics will be satisfied with them", says Carmona. The culmination of work package 6 is the delivery of an implementation plan, which encompasses the protocol for a future clinical trial.  

Milestones

Within work package 6, the first milestone was to accurately identify the stakeholders. Carmona: “This was very interesting, as we asked various partners to discern who they considered relevant for the development and later uptake. Remarkably, every stakeholder they suggested was already included in the project, indicating that we have a very rich consortium. We faced, however, challenges in engaging with external stakeholders, particularly citizens, as reaching them is not easy. The most difficult to reach are people without diseases. Despite this, a list of potential participants has been compiled, which can be utilised by all parties involved in the SPIDeRR project”.
The second milestone involves creating a patient journey. From the perspective of work package 6, which focuses more on qualitative analysis compared to other work packages, a patient journey captures the experiences of individuals in the form of personas, rather than solely relying on numerical data. “A persona, representing a group of individuals with certain characteristics based on the information collected from the patient unit, will be used to think about all hurdles in the patient journey of these individuals. This approach helps with the deployment of tools. To data scientists, this may seem non-scientific, it is just another form science. To develop the patient journey, we conducted several studies, including a systematic review. The final step involves conducting a focus group with patients and citizens from the seven participating countries to gain insights into their experiences”, says Carmona.

An unexpected opportunity

“I didn’t know I was a work package leader until the very end. That often happens in larger research projects, where roles are kept open until the last minute. But everyone in this work package is very nice, and prepared to do whatever is needed at particular moments within the project. It came as an unexpected opportunity for me. We’re all learning, which is fantastic”, says Carmona. Other challenges within work package 6 Carmona mentions are the use of web-based platform SharePoint — some of the colleagues within the SPIDeRR project can’t get access, which creates practical limitations —, and ensuring that all stakeholders are engaged in the project. The latter is Carmona’s main challenge.

Collaborative efforts with other work packages

Work package 6 collaborates extensively with several other work packages within the project, but mostly with work package 2 (‘Data integration, harmonisation and management’) and 3 (‘Modular diagnostics’). With work package 2, focused on data integration, it works on the trajectories. “Data scientists understand patient journey as trajectories. We hold regular meetings to avoid overlap and support each other. Both groups have to conduct systematic reviews with somewhat similar objectives; where they look for numbers, we look for experiences. Our group has extensive experience in systematic reviews, so we exchange what we know to help each other. We also collaborate with work package 3, which focuses on modular diagnostics and the validation of the symptom checker ‘Rheumatic’, by assisting with transcultural validation, which involves (subtle) adaptations needed for different languages.” Additionally, Work Package 3 engages, like other work packages, in dissemination activities within the project. This resulted, among others, in two versions of a project video: one for patients and one for professionals.

Life mottos

 At the end of the interview, Carmona elaborates on her two most important life mottos. “One is to learn every day, especially from mistakes. I make a lot of mistakes every day, but I always learn from them. The second is to make the world a better place. This is what drives me. I think SPIDeRR should help all patients, not just those we, as rheumatologists, can treat better. It would be very difficult for some types of patients, like those with osteoarthritis or fibromyalgia, who would suffer if we only help the inflammatory patients. My goal is for SPIDeRR to help everyone. Let’s see how we can achieve that."