Did you know that, in Europe alone, there are 30 million people living with a rare disease?

A disease is classified as “rare” if it affects fewer than 5 people in every 10,000. As such, despite this significant headline number, the rare community is internally very diverse and dispersed, with a variety of different experiences, challenges, and needs. While this can make it difficult for the community to get their voices heard, translation can make a significant, positive contribution in this regard.

Which is why we were so thrilled to work with the incredible EURORDIS on their Rare Barometer programme!

Who Are EURORDIS?

EURORDIS-Rare Diseases Europe is something truly unique – a non-profit alliance of 1,000+ patient organizations working across 74 countries. Founded in 1997, they connect people living with rare diseases and their families with the global community, strengthen their collective voice, and act to improve their lives through evidence-based advocacy.

One of the ways EURORDIS does this is through Rare Barometer, the EURORDIS survey initiative. Rare Barometer conducts surveys 1-3 times per year via a panel of more than 20,000 people living with a rare disease, social media, and patient networks. Rare Barometer surveys focus on topics that matter to the rare disease community, such as access to diagnosis and treatment, involvement in public life, and availability of support networks. The aim is to gather information on these experiences and turn it into facts and figures that can be shared with decision makers and help to shape policy and practice.

The Challenge

Survey size

The first, most obvious challenge with a project of this type is sheer scale. To cover the entire survey population, we needed to translate into 23 European languages contemporaneously. That’s 23 translators and 23 reviewers – 46 linguists in total.

Cultural context

Then there was the challenge of significantly different contexts. These surveys are sent to people in 74 different countries, who are from different backgrounds, live in different circumstances, and who communicate (and interpret communications) in a vast variety of different ways. We needed to ensure that our translations used language that was understandable and would resonate with the whole audience. Not to mention that, as well as the surveys themselves, we were also working on the associated comms and social posts, as well as the final reporting – three very different types of content.

Technical challenges

Finally, there were a set of technical challenges to contend with, unique to the survey medium. Specifically, the content format was not very translation-friendly – with color coding, non-sequential content, partial translations from previous surveys, source updates, and multiple versions of the same question.

To summarize, the challenges of this particular project were:

• Large population to be surveyed, requiring 46 linguists
• Significant variety in cultural contexts among respondents
• Technical challenges relating to the survey format

What IQVIA Language Solutions did

Survey size

Given our experience in clinical trial translation, this is something we deal with on a regular basis, so we were able to leverage our range of workflow tools and technologies to significantly speed up assignment and management at scale.

Cultural context

To make sure we got it right, linguist selection was absolutely key. Our project managers took the time to find the perfect linguists – in-country, with great sensitivity to language levels, and an understanding of the specific audience in each case. What also helped in this process was that EURORDIS arranged for in-country members of their rare disease community to review the content too where possible.

Technical challenges

To ensure that translation and review were not hampered by the specificity of the format, our in-house engineering team carefully prepped the file before the linguists started their work. This ensured clarity around which content was for translation, which was for editing, which had to remain as it was, etc. After translation and review were complete, they also worked on the file to convert it from this translatable format back to its user-facing format.

Given the specificity, we put in place a robust query process with our linguists, providing feedback and guidance as close to real time as possible. And we made sure to conduct a post-project review with the team at EURORDIS to discuss challenges, learnings, and agree changes to the process for subsequent projects.

Outcomes

The first survey was delivered on time and on budget. (As a non-profit, the latter is particularly important for this client.) We identified some challenges across the first project, and collaboratively defined how to resolve them going forward, ensuring future projects would run even more smoothly, maximizing the benefits for all involved.

But most importantly, the Rare Barometer survey went live in all 25 languages (including English and French) in July 2024 and ran until September. It was completed by over 10,000 people around the world (not just Europe). The resulting European, national and disease-specific findings will be used by EURORDIS and patient organizations to undertake advocacy activities and inform policies across Europe.

If you need help managing surveys or any other patient-facing content at scale, get in touch with us and we will be happy to advise on best next steps for translation.