A patient representative’s personal take on the Third World Bronchiectasis Conference
Thomas Ruddy shares his experience of the Third World Bronchiectasis Conference (WBC3), which took place in Washington, DC, USA last month.
What do patients want to know about the WBC3? The situation with bronchiectasis research is marked by contrasting undercurrents. On the one hand, there is an encouraging flurry of activity, as you see in the descriptions of presentations; on the other, though, clinical studies have not reached their end-points, i.e. were not successful. Yes, there have been three WBCs, but next year there will only be a researchers’ meeting, with the next public WBC due in two years.
One highlight is that Europeans are emerging as the leaders in bronchiectasis research. EMBARC has the largest set of patient data anywhere, four times larger than the next-largest database.
Kevin Winthrop from Oregon held the keynote speech. He was optimistic, looking back on the progress made since 2008 on both bronchiectasis and non-tuberculous mycobacterial pulmonary infections (NTMs). He has broken new ground by setting up a patient-powered research network (PPRN). PPRNs collect patient-generated health information on a large scale, often through surveys to complement clinical studies, which are artificially designed, with real-life data. In Europe the idea of setting up a PPRN, such as one for bronchiectasis, must contend with the strict General Data Protection Regulation (GDPR). Consent, though, is a viable means of allowing researchers to access patient data.
Patient registries and PPRNs comprise means of data sharing. Likewise, James Chalmers called for more data sharing among companies and bronchiectasis researchers in general, which would quicken progress in reaching a breakthrough.
During the WBC3 it became clear that bronchiectasis is embedded in a field of multiple airway diseases; it is useful not only to see each one as discrete, but also to clarify the relationships among them. For instance, many speakers referred to NTMs in their presentations, emphasising their close relation to bronchiectasis. However, no one has determined conclusively yet which disease is the cause and which the effect of the other. Therapies could then be targeted more accurately.
Likewise, chronic obstructive pulmonary disease (COPD) comes into play, as bronchiectasis is often misdiagnosed as COPD. On this issue James Chalmers has stated in a personal communication: “We need to learn from the world of COPD, but always remember that bronchiectasis and COPD are not the same thing and many patients get frustrated that their disease is misdiagnosed as COPD. So we need to walk a bit of a fine line, working closely with organisations like the COPD Foundation while ensuring there is independent work into bronchiectasis”. They have valuable experience, for instance, as evidenced in the fact that the late John Walsh of the COPD Foundation set up a COPD PPRN with $2 million.