Kim Cocks, PhD, and Antoine Regnault, PhD
Statistics SIG Co-Chairs


At our last in-person conference, in San Diego in 2019, there was a wonderful session on assessing change in patient-reported outcome measures (PROMs). It was during that dreaded last session of the day (when everyone would really prefer to be heading out for dinner) and in one of the smallest rooms, but as a statistician it was one of the sessions of the conference that had the most relevance and therefore was not to be missed. There was a room full of great statisticians (you know the ones whose books you grew up on and you are slightly in awe of?), some great speakers and standing room only by the time it started. Despite the late hour, the session discussion after the talks was lively and freely flowing, and it would have been unthinkable not to continue it at the bar after the session. What started as a table for 4 soon turned into a table for around 24 as more and more people joined us to continue the discussions. Fast forward a few beers and the idea for the Statistics SIG was born!

ISOQOL already has an active and successful Psychometrics SIG that focuses on the development and validation of outcome measures, but there wasn’t an existing forum to focus on the challenges of analysing data from the outcome measures or to connect ISOQOL members with an interest in Statistics in order to advance the field. In 2020, a group of us applied to the Board and created the Statistics SIG with the mission to “connect statisticians working in the field of quality of life and provide a platform for communication, interaction and collaboration.” Our aim is to identify and progress key areas for research and provide workshops and training for the wider ISOQOL membership. As we all know, since then we have not had the opportunity to meet face-to-face. Our inaugural meeting in 2020 and then our next meeting in 2021 were both held virtually. We made good use of the virtual ‘chat’ function, but it was difficult to provide a platform for all our new members to share ideas for the new SIG. We agreed on having an initial focus on four workstreams: analysis in the presence of missing data, time to event analyses, estimands and data visualisation.

We are thrilled now to invite everyone to our first official, in-person SIG meeting, which will be held at the 2022 conference in Prague on Friday, 21st October from 11:40 am – 12:40 pm. We hope to give many more members the opportunity to put forward ideas as well as hear about progress so far. We also have a full-day workshop run by some of our members, titled “Analysis of longitudinal patient-reported outcome measures in randomized controlled trials with missing data,” and a Statistics SIG symposium, “Applying time-to-event analyses to PRO data from clinical trials: Current developments and future perspectives.” Both will be held on Wednesday 19th October. These reflect the work of two of the four workstreams we have initiated in the SIG since its conception.

We would encourage anyone with an interest in statistics and measuring quality of life to join us. You don’t need to be a statistician and we promise not to fill the room with formulae and equations! Our current membership of 90 people is a broad mix of people from varied backgrounds and specialities, which is important to us so that we can hear ideas from many different perspectives on our future direction.

The Statistics SIG Meeting will be held on Friday, 21 October from 11:40 am – 12:40 pm.

This newsletter editorial represents the views of the author and does not necessarily reflect the views of ISOQOL. 

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The International Society for Quality of Life Research (ISOQOL) is a global community of researchers, clinicians, health care professionals, industry professionals, consultants, and patient research partners advancing health related quality of life research (HRQL).

Together, we are creating a future in which patient perspective is integral to health research, care and policy.