Interview with SPIDeRR partners: Maxime Raffray and Georgy Gomon

 “The most exciting part of this project is collaborating with healthcare systems from different countries. What’s familiar in one country can be very different in another county, creating both challenges and opportunities”

At the SPIDeRR conference in Stockholm, we had the opportunity to conduct a joint interview with Maxime Raffray, postdoctoral researcher at the Clinical Epidemiology Division of the Karolinska Institute, and Georgy Gomon, PhD student at the departments of Rheumatology and Medical Statistics of the Leiden University Medical Centre. Both are involved in work package 2 of the SPIDeRR project, which aims to gather and coordinate large-scale data from multiple partners. The goal of this work package is to better understand the patient journey, particularly for individuals with musculoskeletal complaints, and to lay the groundwork for other work packages by providing essential tools and identifying key areas for improvement.

Work package 2 focuses on two key aspects of rheumatic diseases: early identification and timely intervention. Raffray particularly focuses on patients at risk for rheumatoid arthritis, working on strategies to identify them quickly and initiate treatment that can prevent disease progression. Gomon, on the other hand, primarily concentrates on understanding general rheumatic complaints and how patient characteristics influence the referral process from primary care to specialists. Together, their efforts aim to improve and optimize the referral process for patients with potential rheumatic diseases.

Optimizing rheumatology referrals
In the past year, efforts with other partners have been made to collaborate on understanding the patient journey across different EU countries, including Sweden, the Netherlands, Spain, the UK, and Hungary. Although data integration remains a challenge, the team of work package 2 has made notable progress since the start of the SPIDeRR project — both in data collection and in developing studies to quantify the patient experience. For example, they have analysed how often patients with musculoskeletal complaints visit general practitioners and whether these visits lead to a referral to a rheumatologist, comparing the results across these countries.
Within this context, the field of rheumatology is currently facing two key challenges: delayed referrals to specialists and over-referrals for diagnostic purposes. Gomon: “Many patients with rheumatic complaints are not seen quickly enough by specialists, often missing critical timeframes like the 12-week window for early diagnosis of rheumatoid arthritis, primarily due to inefficiencies in primary care. On the other hand, many patients are referred to rheumatology specialists for diagnostic confirmation or to exclude rheumatic diseases rather than for treatment, leading to a bottleneck in specialized clinics. Our research shows that the structure of a healthcare system greatly influences which patients are referred to secondary care, meaning referral management tools must be adapted to each (local) healthcare system”.

Impact of healthcare system variations
The discovery that the way a healthcare system is organised has such a strong effect on which patients are referred to — and seen in — secondary care was quite unexpected, says Gomon. “We found clear differences in the number of patients referred to specialists. For example, in Spain, 21% of people with musculoskeletal complaints are referred, compared to 11% in the Netherlands and just 5% in Sweden. This shows how much the healthcare system can shape referral patterns. This is an important finding, because it means we need to adjust our referral tools depending on how the local system works. And secondly, it raises the question: should we also be thinking about changes to the healthcare system itself? That may be beyond our control, but it’s clearly part of the bigger picture.” The exact numbers mentioned here will be shared in “The diagnostic pathway of (rheumatic) musculoskeletal complaints across Europe: A multi-country analysis of Primary and Secondary care”, a manuscript that is currently being worked on within work package 2.

Next steps
Over the coming year, work package 2 will continue its work to combine data from five countries and strengthen integration with other work packages. For example, it will collaborate on the rheumatic questionnaire. Since work package 2 forms the foundation of the entire project — covering both data collection and early development — it had a bit of a head start and is already slightly further along than the others. Gomon adds: “I believe that in the future, we’ll play a key role in harmonizing all the data. As we saw this morning during the session of work package 3, they need a wide range of data types. I expect we’ll stay in close contact, because the experience we've gained so far will be very useful, especially for their contribution related to Modular-SPIDeRR”.
Work package 2 will also continue its collaboration with work package 6, as integrating quantitative data with the qualitative insights from work package 6 is expected to play a key role in advancing harmonization across the project. Furthermore, in the coming year, the work package 2 team plans to publish the manuscript mentioned in the previous paragraph, which will reflect both the progress made and the ongoing efforts to further refine the referral system.

Cross-country collaborations
Both Raffray and Gomon highlight the excitement of working with diverse data sets and the challenges that come with cross-country collaboration. Raffray: “The most exciting part of this project is collaborating with healthcare systems from different countries. What’s familiar in one country can be very different in another, which brings both challenges and opportunities. I’m especially looking forward to exchanging expertise and methods, particularly in addressing primary care data challenges and analysing patient trajectories”. Gomon adds that access to such a wide range of data is one of SPIDeRR’s major strengths: “The variety of data in this project is invaluable and will help us achieve stronger, more meaningful results”.
According to Gomon, one of the biggest challenges when working with real-world data — especially electronic health records — is not just gaining access, but making sense of it. “It can take months to fully understand the data’s structure, spot inconsistencies, and interpret the nuances. Preparing real-world data for analysis is a time-consuming but essential step. It’s often underestimated, yet absolutely critical for generating useful insights.”