ISOQOL 2024 event review

We had a terrific time attending ISOQOL 2024 in Cologne, Germany, and the eCOA Consortium face-to-face meeting that followed. The International Society for Quality of Life Research (ISOQOL) is a non-profit organization with a staff of only six people, yet they put on an annual conference that’s absolutely packed with interesting oral presentations and posters. For anyone working with Clinical Outcomes Assessments (COAs) as we do, it’s a great opportunity to learn from your favorite academic and industry thought leaders. Here are my personal highlights:

The conference begins on Sunday each year, and the day is used for in-depth workshops and Special Interest Group (SIG) Symposia. As co-chair of the Digital Health and eCOA SIG, I had the great pleasure of working alongside colleagues from the eCOA Consortium to present on the following question: Have we truly progressed with optimizing the collection of patient-reported outcomes in clinical trials? Estelle Haenel (Kayentis) spoke about support for clinical trial sites, I introduced key accessibility concepts, Bryan McDowell (Clario) reported on initial—and positive—comparability testing results for ePRO accessibility features, and Flo Mowlem (uMotif) shared the most recent consensus-based ePRO design best practices publication. This particular best practices publication also happens to be an RWS eCOA Solutions team favorite! Scottie Kern (eCOA Consortium) kept the mood light and our panel in excellent order as we were joined by Jens Lehmann (Medical University of Innsbruck) for a group discussion. We had great audience engagement, met kindred spirits, and wrapped everything up in time to heed the siren song of Welcome Reception wine.

It’s always difficult to decide which sessions to attend and posters to read, and even more difficult to highlight my favorites. I found the following presentations memorable: 

• Generative AI to Facilitate Conversational Data Collection Models: There’s no shortage of “how will AI shape our industry” conversations in our lives, and some are painfully at odds with ways in which AI currently works best. Kevin Weinfurt (Duke University School of Medicine) proposed an interesting use case that I hope will receive further consideration and testing. Conversational Data Collection Models elicit “free text” feedback as phrases and sentences directly from the patient, rather than selections from available response options. This feedback must then be reviewed and coded, which is far more labor intensive than scoring a VRS or Likert, and are challenging to manage at scale. Enter generative AI, as a tool to respond in real time to patient inputs, and to code their responses. Looking forward to following this topic. 
• Pharmacist-facilitated PROM monitoring: reach, equity, and adoption of an EHR-integrated, telehealth PROM care model where patients do not need internet access: I’m from a state in the US with many rural residents (Nebraska), and our Linguistic Validation team translates COAs for patients and sites around the world. Not everyone seeking medical care or participation in a clinical trial has a contemporary smartphone and reliable home wifi. As of 2023, more than 10% of United States households are estimated to lack home internet access. There are solutions to these problems in the realm of Digital Health and eCOA, but they require acknowledgement and continued discussion. Angela Stover (University of North Carolina, Chapel Hill) did just that, and shared her team’s solutions to gathering quality of life data from patients in North Carolina without wifi: call them. I’ve seen Dr. Stover’s presentations in the past and continue to find her both whip-smart and practical. 
• Dealing with the Complexities of Concurrently Translating and Implementing Electronic Clinical Outcome Assessments: Best Practices Roundtable: When Huda Shalhoub (Bayer), Megan Turner (GSK), and Sonya Ermenco (C-PATH) collaborate, I’ll pay attention. Megan, who is also co-chair of the Digital Health and eCOA SIG, introduced us to the Electronic Language Feasibility Assessment (ELFA), a process used by her team to review COAs “to identify necessary intricacies in context and formatting changes, including navigational text”. This assessment will help all parties align on edits required to paper COAs for electronic administration, and early alignment of all stakeholders. I hope to see this practice spread across the industry!

This SIG, which I co-chair with Megan Turner (GSK) and for which Ana Poplanicki (GSK) serves as stellar secretary, was launched just last year. We expected a small group for our ISOQOL SIG meeting, and that we would discuss the topics of interest chosen by group vote. Rather than a few attendees, we had a full house of lively participants weighing in on the question: how can we speed up eCOA implementation? ISOQOL has historically drawn more sponsors and instrument owner attendees than eCOA providers, but this year we saw a shift in the balance, which is essential to this topic. The SIG discussion was impassioned and not a single topic was resolved in our scant 50 minutes: we have a lot of good work ahead of us! Stay tuned for an upcoming educational session and addition group discussions. And many thanks to our terrific sub-team group leads: Foram Khatsuria (University of Birmingham) and Melinda Johnson (Lionbridge).

As a pre-competitive, collaborative organization, eCOA Consortium meeting content is restricted to its members. And the bar patrons who can’t help but overhear the spirited discussions over drinks that inevitably follow. I love these meetings. RWS joined the Consortium in 2022, and since my first attendance following a DIA conference in Chicago I’ve been enamored of the thoughtful, passionate, and deeply informed discussions this group brings to its members. We’re currently participating in the Translations and Licensing project as part of the “Getting Better Together” initiative, as well as the Accessibility of ePRO working group. Before RWS joined, our eCOA Solutions team constantly read and referenced the group’s publications. Having the opportunity to discuss current industry topics, and work to improve them, with the people you’ve long cited is an honor. The members are also, conveniently, hilarious. 

We’ll count down the days until ISOQOL 2025! 

Find out more about the expertise that RWS contributed to ISOQOL 2024 – our posters are available for reference here ISOQOL Conference Posters.