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Patient representatives join discussions with ERS Lung Cancer Group members

Last Update 06/04/2021

This pan-European meeting brought together patient representatives and healthcare professionals, from Iceland to Israel, with 35 people attending the meeting in Berlin on 11-12 November, 2017.

The aim was to set up an interactive network of professionals and patient representatives, and together identify specific European patient-centred projects in lung cancer care to take forward.

Chair of ERS Lung Cancer Group, Dr. med. Torsten Gerriet Blum said: “This meeting was a very important step towards better integration of patient priorities as well as harmonization and improvement of standards of care in lung care!”

Janette Rawlinson, member of the patient advisory group, (pictured second from right) said: “It was a great opportunity to get to know others working in the lung cancer arena at a well-organised, multi-disciplinary and multi-national meeting and catch up with ‘old friends’.  Thanks for allowing me to participate.” 

The meeting included presentations on current studies:

  • ADVANCE 1:  Benchmarking of 2 lung cancer services in Glasgow and Berlin to improve care.
  • ToXcsin: an online monitoring system for detection of side effects of lung cancer therapies.
  • Pan-European lung cancer registry: vision and steps toward achieving this.

And also discussions on a wide range of potential projects including:

  • Access to treatment: gather data on access to lung cancer drugs.
  • Quality of lung cancer care: identify improvement areas including access to diagnostic testing.
  • Attitudes towards CT screening programmes: patients and professionals.
  • Risk/environmental factors: literature review and surveys to map evidence.
  • MDT (multi-disciplinary team) comparisons: analysis of decision making.
  • Understanding quality of life: patient surveys (based on survey developed in Lithuania)

Janette Rawlinson shares her highlights:

This was a wonderful opportunity to be included in the thinking and discussions around a number of existing and proposed studies to help improve understanding of the condition and outcomes for lung cancer patients. It was really helpful to have the opportunity to put our perspectives for inclusion in the consideration of study designs and next steps.

In the UK, we are often concerned about the variability of service for lung cancer patients which is dependent on where they live and how up-to-date their clinicians/centres may be on treatment developments, but this was amplified many times over by hearing the differences that exist between the countries represented at the meeting.

I was surprised at the excitement of using industrial techniques within healthcare such as Kaizen (Toyota methodology around continuous improvement) used in the Advance 1 study, as this was being adopted in industry in the 1980s. If all involved took steps to improve their contribution, reduce waste and suggest ideas for better outcomes irrespective of where they are in a process chain, how much more efficient and effective healthcare services would be around the world. However it is better late than never to adopt improvement thinking in this way. 

I was really pleased that patients and carers’ perspectives will continue to be included in helping to shape surveys and other work through ELF’s patient advisory group. I am looking forward to the follow up! 

Picture: Vagn Jespersen (Denmark), Ewelina Szmytke (Poland), Janette Rawlinson (UK), Dan Smyth (Ireland) 

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