A summary of research published in ERJ Open Research
It is essential that healthcare professionals understand the values, needs and concerns of those living with a condition. This can improve care for an individual and help them feel confident in the quality of care they receive.
Many people post about their experiences of living with a condition on online platforms such as social media, forums and blogs. This online discussion amounts to a vast area of information that could shed light on how people feel when living with a particular condition.
This new study is the first to examine the views posted online by people living with bronchiectasis.
Researchers used search terms linked to bronchiectasis and scanned posts on open social media platforms (e.g. Twitter, Instagram, YouTube, as well as in blogs, news, forums and public Facebook pages or groups). They looked at posts in English, Spanish, French, Italian and German languages to collect patients’ and caregivers’ perspectives on symptoms, treatments and burdens of the disease. They examined posts between January 2018 and December 2019 from the UK, Spain, France, Italy, Germany, the USA, Canada, Australia and New Zealand.
The posts were classified into different areas such as the needs expressed by an individual and topics that appeared to start discussions.
The study revealed some key areas that were most valued by people living with bronchiectasis. Improving symptoms such as cough, shortness of breath and mucus production, appeared to be the biggest concern of people posting online.
The online discussions also highlighted the need to increase awareness among healthcare professionals about the tests and procedures available for bronchiectasis. This was found to be a key part of getting the condition diagnosed quickly and providing appropriate care and support to people living with the condition.
Social media is one of the most diverse and largest resources of information on how people experience their condition. This study uses the experiences posted about online to build a picture of a person’s emotional journey from symptoms and diagnosis to everyday life with the condition. The authors conclude that using experiences taken from social media can be a useful tool to help healthcare professionals understand more about the patient perspective and ultimately, improve the quality of care delivered.
Title: Patients’ perspectives on bronchiectasis: findings from a social media listening study
