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Conversation with Dr Michal Shteinberg

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.

Please tell us a bit about your background

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’.

 

You work with EMBARC – can you tell us about this?

EMBARC has several main projects:

  1. A registry of nearly 20.000 people with bronchiectasis across Europe, collecting information such as lung function, bacteria in sputum and treatments. Findings from research projects analysing the data have been published: Bronchiectasis in Europe: data on disease characteristics from the European Bronchiectasis registry (EMBARC) – The Lancet Respiratory Medicine.
  2. The BRIDGE study (Bronchiectasis Research Involving Databases, Genomics and Endotyping) aims to match the right treatment to the right patient and is a biobank of samples (sputum, blood, urine) from up to 1500 patients (Find out more at: The European Multicentre Bronchiectasis Audit and Research Collaboration (EMBARC) ERS Clinical Research Collaboration | European Respiratory Society (ersjournals.com)
  3. Publication of books and guideline documents to guide the care of people with bronchiectasis
  4. Planning and conducting clinical trials (as well as helping pharmaceutical companies) to develop therapies for bronchiectasis
  5. Publication of guidelines regarding the care of bronchiectasis for respiratory specialists and other healthcare professionals. (See the original guideline here and the ELF lay guideline here.

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.

How are you involved with the ELF bronchiectasis Patient Advisory Group (PAG) and why is working with patients important to you?

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.

What are the highlights/benefits of the EMBARC collaboration with the Bronchiectasis PAG?

The collaboration between the PAG and EMBARC in the last few years has yielded several interesting projects:

  • Surveys about the symptoms and needs of people with bronchiectasis, and those with non-tuberculous mycobacteria (NTM).
  • A shared publication on ‘travelling with bronchiectasis’, with advice for patients and caregivers (read it here).
  • A yearly Bronchiectasis Patient Conference organised by the PAG for patients. The conference includes talks by patients and clinicians alike and is intended both for the newly diagnosed patient who wants to learn about their diagnosis, and the more experienced patient who wants to learn about the latest in bronchiectasis research. The conferences are translated into many languages, recorded, and are available to watch on the ELF YouTube channel.
  • A website with information about bronchiectasis and its care, and the treatments in development, which is now updated by patients and experts as a collaboration.
  • One of the lessons from the experiences of the patients is the need to educate more healthcare professionals, including family doctors, about bronchiectasis. We started a series of webinars called ‘Lessons in bronchiectasis’ for healthcare professionals. This project was certainly inspired by the ELF bronchiectasis PAG.
Why is the ‘Bronchiectasis Question Time’ webinar important? And what are you most looking forward to about the webinar?

‘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.