Derek Kyte, University of Birmingham.

I recently attended the 21st Annual ISOQOL (International Society for Quality of Life Research) conference. The event was set in the iconic city of Berlin, which was gearing up for this week’s celebrations to mark the 25th anniversary of the fall of the Berlin wall. This year’s conference highlighted important work in several areas, including: the impact of patient-reported outcome (PRO) use in research; and the integration of patients and other users in patient-reported outcome measure (PROM) development and use.

Having attended the previous year’s meeting I knew that it would be an extremely engaging and thought provoking few days and the conference did not disappoint. There were some excellent plenary speakers, including Professor Nick Black (Kings Fund, UK) who discussed the NHS PROMs initiative in the session entitled: PROs: contributing to Better Services & Better Societies (see here for a forthcoming Kings Fund PROMs conference); and Rheumatologist Jon Kirwan (Bristol, UK) who spoke, with patient advocate Maarten de Wit, about the importance of integrating patients into PROM development and research.

Patient involvement in the ISOQOL conference was evident throughout, which from a personal point of view I felt was one of the stand out – and most positive – aspects of the meeting. More conferences should adopt the same approach. Those with an interest in patient involvement in PROMs (or indeed any) research may wish to take a look at this insightful BMJ blog from Paul Wicks, vice president of innovation at PatientsLikeMe who also presented at the conference.

On a personal note, I was able to present my SPCR doctoral work on PRO trial design to hundreds of researchers in the field during the parallel oral and poster sessions, leading to the development of new and exciting collaborations. I also had my first experience of being an expert panel member, during a debate on the monitoring of PRO Alerts in clinical trials.

I would thoroughly recommend future ISOQOL conferences to SPCR trainees – the ISOQOL research community is incredibly warm and supportive towards early career researchers – and the conferences offer a great opportunity to increase the reach of one’s research and, in my experience, to meet experienced researchers keen to collaborate on interesting PROM- or Quality of Life-based projects.

Derek Kyte is SPCR doctoral student at the University of Birmingham.



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