Conversation with Arzu Yorgancıoğlu

In this month’s professional spotlight, we spoke to Arzu Yorgancıoğlu, chair of the ERS Advocacy Council. Arzu has a strong history of patient advocacy and in this spotlight talks about how you, as patients, can get involved through ELF’s European Patient Ambassador Programme.

Please tell us a bit about yourself and your background.

I am Arzu Yorgancıoğlu, full-time professor at the Department of Pulmonology, Celal Bayar University Manisa, Turkey. I am a clinical specialist in pulmonology with a long-term scientific interest in diagnosing and treating asthma and chronic obstructive pulmonary disease (COPD). I am a fellow at the European Respiratory Society (ERS) and the American Thoracic Society (ATS).

I served as the president of the Turkish Thoracic Society between 2014–2016 and I am the chair of Global Initiative for Asthma Board of Directors. I am the coordinator of the Reference Site European Innovation Partnership on Active and Healthy Aging in Turkey. I am also the chair of the WHO Global Alliance against Respiratory Diseases and the Advocacy Council Chair of ERS.

And I am really a fan of primary care and patient organisations. 

What are the areas you think should be of primary concern to patients and patient organisations?

Non-communicable diseases (NCDs) — conditions that do not spread from one person to another, such as COPD, asthma or heart disease — make up 8 in 10 of all diseases in EU countries and are the leading causes of people dying early. The number of people with NCDs is expected to increase because of Europe’s ageing population. Reducing the effect of NCDs on everyone requires a holistic approach that tackles health inequalities across the board. Promoting healthy behaviours and preventing disease could reduce early deaths by as much as 70%.

Hundreds of millions of people of all ages across the world are affected by preventable long-term lung diseases. Over half of them live in low- or middle-income countries or deprived populations. My vision sees the needs of lung health leading to pioneering governmental policies to improve the environment, behaviour and air quality risk factors that are responsible for much of the respiratory disease in Europe.

Preventing and controlling long-term lung diseases, and keeping them on the global health agenda, will require the ongoing energies of everyone involved in the respiratory community. We need to work together! 

How have you (and the ERS Advocacy Council in general) worked with ELF to improve advocacy around issues that are important to patients?

The whole Council and I have worked with ELF so happily and have been very productive:

  • We have prepared an ERS Official statement on Asthma and Environment with the contribution of the ELF Chair. And we have defined a “green asthma patient” who is enabled and empowered to make choices to reduce their carbon footprint without compromising their own health outcomes.
  • We have had many webinars on the ERS Respiratory Channel with the contribution of the ELF Chair.
  • We have had some wonderful patient stories presented during MEP Lung Health Group events and other conferences (on various topics such as access to care, antimicrobial resistance, and the European Health Data Space). It is also fantastic to welcome patient experiences into the ERS Congress. This brings a real-life touch to the scientific sessions.
  • We have also worked together on EU stakeholder consultations (including those on tobacco, environment, inclusion of ERS and ELF insights to the EU Healthier Together Initiative).
  • We are working together in the European Lung Health Group.
 How can patients be more involved in advocacy activities?

I strongly believe that patients should always be at the centre of all healthcare approaches, as it is imperative that it is their needs that are addressed and their health that is protected.

There is a crucial role for patients both in national respiratory coalitions and at the EU/international level. They are the voice of real life and the people that policymakers listen to.

Lungs Europe is a great collaboration between ERS and ELF. It brings both patients and healthcare professionals together to raise the profile of respiratory medicine at the Brussels level. It will, in the future, provide support to ERS Clinical Research Collaborations to apply for EU funding and to coordinate projects and act as positive additions to ERS and ELF teams for extension of activities at EU level.

How can ELF help empower patients to be more engaged in advocacy?

We need more engagement with patients and patient organisations to improve information transfer between themselves and policy makers, raising their awareness about their diseases in terms of prevention, diagnosis and management.

Respiratory patients are vulnerable to environmental effects such as air pollution, tobacco, airborne allergens and climate change. Climate change may amplify current risks for respiratory health. Patients should be their own advocates in preventing these and asking authorities to fight them.

ELF’s European Patient Ambassador Programme (EPAP) is a great opportunity to learn more about how patients can make changes in policy. It is a free, online, self-learning programme that introduces patients and carers to some of the basic skills and knowledge needed to represent yourself and others successfully.

Our support for patients in doing all this is crucial. We need to work together.