ELF would like to thank the 12 patients and carers who shared their stories at this year’s virtual ERS Congress. Each patient and carer took part in a video in which they shared their experience of living with a lung condition. The videos were shown alongside presentations from healthcare professionals, and some patients and carers also participated in a live question and answer session at the end of each set of presentations.
Congress delegates have told us how valuable they found the videos, saying that it would help them improve their practice by better understanding the patient’s perspective. Here are some of the comments we have received from delegates about the videos:
- The video was a huge asset to the session! The production was wonderfully made and depicted exactly what I believe we should: to highlight to physicians and healthcare providers how patients feel when they have a certain condition.
- It is always great to have patients’ points of view to remind us of why we do research.
- The patient genuinely shared her experience and expectations as a person/women living and struggling with lung cancer; her disappointment and concerns with the standard one-fits-all oncologic health services; she showed us the importance of patient associations for improving the quality of life of patients and providing them tailored care that fully meets their expectations. She definitely contributed to the session’s aim, for me she was the best speaker, a real star!
- Both the video and the presence of the patient helped to make patients at the core of this symposium. I think the success relied also in the person of the patient, who was really enthusiastic and raised important issues adding a lot to the debate.
- The highlight of the session. It just adds another dimension and conveys the message why certain recommendations in this case are important for families. It brings the science to life.
- This video was very well done and really provided useful insights. Such initiatives are highly infrequent in such scientific sessions, but from my perspective this experience definitely proves that it has a high added value.
- I thought the patient was outstanding. The video was really helpful and her contribution to the Q&A was very valuable.
You can watch the videos, along with other videos of patients and carers sharing their experiences, on our patient experiences page.
