Last week took me to Milan for the 7th EuroQol Academy meeting. It was my second Academy meeting since I became a EuroQol member early last year. The meeting was a 2-day event for me, but it was preceded by a 1-day Early Career Researcher meeting and book-ended by various working group and committee meetings to fill the week.
To outsiders, EuroQol can seem like an enigma. There isn’t much churn in the attendee list at these meetings, so they’ll remain a mystery unless we tell people about them. Koonal wrote meeting round-ups for EuroQol Plenary meetings in 2016 and 2017. The Plenary meetings are similar to HESG and other discussion-led conferences. The Academy meetings include some discussion of research, but they are more focused on EuroQol’s internal wranglings and existential crises.
The theme for this meeting was From cradle to grave: can we measure and value HRQoL consistently over the lifespan? Thus, the sessions explored the challenges associated with using EuroQol’s suite of instruments to measure and value health status and health-related quality of life from infancy to old age. For the uninitiated, the EuroQol suite of instruments now includes the EQ-TIPS (for infants), the EQ-5D-Y (3L and 5L, for children and adolescents), and the original flavour EQ-5D (3L and 5L, for adults).
Having more than one instrument, and targeting more than one demographic group, creates a variety of fundamental questions. Are the instruments measuring the same thing? How do we interpret differences in response distributions? How do we manage data collection and analysis at the age thresholds for each instrument? Do we need a different value set for each instrument? Do we need age-specific value sets? If we have multiple value sets, how can we link them to create a cohesive approach?
These were the main questions discussed throughout the meeting. Five plenary sessions made up the majority of the programme. These were delivered by speakers – not all EuroQol members – who discussed their research and ideas on critical topics. Most of the discussion at the meeting fell into one of two categories; measurement and valuation. For me, the two most impactful plenary sessions were those explicitly linked to these topics.
The measurement session was delivered by Janine Verstraete, Fanni Rencz, Jill Carlton, and Julie Ratcliffe. The speakers presented comparisons between the different descriptive systems, quantitative and qualitative findings from participants’ responses to the EQ-5D and EQ-5D-Y, and an introduction to a non-EuroQol instrument for older people (QOL-ACC). The valuation session was delivered by Bram Roudijk, Donna Rowen, and Matthijs Versteegh, who presented different perspectives on whether we should be considering age-specific value sets. I was most convinced by Donna’s (albeit nascent) idea that we don’t want the same value sets across all ages, but we do want to employ the same values, which, I suppose, might mean consistency in concepts and methods. The challenge is to be clear about what we mean by this.
The plenary sessions were enjoyable and informative, but other parts of the programme were highlights for me. The guided poster session was excellent, providing a good 20 minutes or so for the discussion of each poster. There were also smaller group breakout sessions, which effectively enabled more people to have their voices heard during an unstructured discussion.
Which brings me to my big complaint about the meeting. The usual suspects dominated the discussion, especially during the plenary sessions. Don’t get me wrong, we aren’t talking about washed-up researchers with nothing interesting left to say; the older guys (and by guys, I do mean men) are still bringing novel ideas to the table. But we really need to hear from the people who are not the older guys. So here is my plea to any of the older guys who might be reading this. Do not be the first one at the mic; give someone else the opportunity. You’ll have an audience for your opinion another time. And, for the organisers, employ some forceful chairing if they don’t adhere!
For me, the theme of the meeting draws into sharp focus the need for us to do a better job of defining that which the EQ-5D measures, repeatedly referred to as “it” during the conference (definitely not utility, but maybe health-related quality of life). As I articulated in the breakout session, I believe that health-related quality of life is a social construct. Crucially, it is constructed in different ways for different age groups. This seems obvious to me; we do not consider ‘good health’ to mean the same thing for an adult as for an infant. The definition clearly demands more than a simple biological characterisation or a preference-based understanding of health. But my suggestion was summarily dismissed by the room. I hope to find the time to write a blog post about this to convince you all otherwise.
Overall, I enjoyed the meeting a lot, especially catching up with EuroQol friends. Having the meeting dedicated to a theme was an excellent idea that helped to focus everybody’s thinking, and it facilitated real development in members’ perspectives on the research challenges. If we’re voting on a theme for the next meeting, I’m sure you’ll agree that dead/death/dying is the best candidate.