This month we spoke to Dr Michal Shteinberg, a phenomenal advocate for patient empowerment who works closely with the ELF Bronchiectasis Patient Advisory Group (PAG). Here she talks about this and the upcoming ‘Bronchiectasis Question time’ webinar.
I am a pulmonologist working in Carmel Medical Center in Haifa, Israel. After my training I further specialised in the care of adult cystic fibrosis and bronchiectasis. My setting is a University affiliated hospital with a close connection to a health maintenance organisation (HMO) specialist clinic, which means I care for patients both as inpatients and outpatients in the hospital, and at a community specialist clinic. This has the advantage of having a large database of patients and close collaboration with family doctors and other specialists. The collaboration between hospital, academic centre and community has a lot of potential regarding research. I joined the European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) collaboration in 2015 as the EMBARC representative for Israel. In 2018 I took a role in the Management Board as lead of the EMBARC work package ‘Patient Engagement and Education’.
EMBARC has several main projects:
Each of these projects has a steering committee which involves patients. The input of patients is valuable to us in ensuring our work priorities align with those of patients.
One of the sentences I take from my very early training as a medical student is “listen to your patients – they will teach you the most”. This was intended to teach us about the importance of observation and empathetic listening, but it has also taken on a new meaning for me in the past years. I think the interaction with our patients, both my own and within the PAG, is very fulfilling in the way that it tells us about the gaps in research and in its implementation. The PAG is an excellent resource. They are a group of highly knowledgeable, intelligent people, who frequently highlight the gaps by reflecting on their own experience.
The collaboration between the PAG and EMBARC in the last few years has yielded several interesting projects:
‘Bronchiectasis Question Time’ is a live event planned for 30 June in the run-up to World Bronchiectasis Day, which is on 1 July. Continuing on from the patient conference, it will be a more informal, question-based event, where patients are able to send in (or post live on the day) their questions and get answers and hear discussions from a global group of experts. Among the panel will be a physiotherapist (Arietta Spinou), a patient (Donna Heilweil), a scientist (Amelia Shoemark), and four clinicians (Tim Aksamit from the USA and myself, as well as Natalie Laurent from France and Josje Altenburg from the Netherlands, who will answer live chat questions). The host for the event will be Barbara Crossley, a patient with bronchiectasis. I’m looking forward to some exciting and thought inspiring-questions. This event too will be translated into up to 30 languages and recorded.
Learn more and register for the ‘Bronchiectasis Question Time’ event.
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