The goal of DiscovAIR is to create an interactive atlas of the human lung. The team will use information from a range of people with both healthy and diseased lungs to build a visual guide of how the cells in the lung interact with each other, with drugs and with disease.
To make sure that the design of the Lung Cell Atlas is user friendly, the team held a user group meeting at the 2020 ERS Lung Science Conference in Estoril, Portugal. The following article is a summary of that meeting.
The user group meeting was organized by the DiscovAIR team and the European Lung Foundation.
The goal of the meeting was to learn about the needs of each user group, what content they would like to see and how they wanted the design of the Lung Cell Atlas to be. We also wanted to learn how to make sure the Lung Cell Atlas is used by each group.
The user group included representatives from each of the likely future users:
Patients discussed how the tool would be useful to them, mainly as a reference tool for educational purposes, by helping them understand:
It could also help them to better communicate about their conditions with their healthcare professionals and with other patients or the public. They felt that being able to use this tool to talk about lung conditions could have a positive impact to help educate the next generation of patient advocates and respiratory scientists.
Finally, the patient representatives also recognised the Lung Cell Atlas as a potential tool for scientists, clinicians and pharmacological industry to develop novel treatments for lung disease that can improve the quality of life for people with lung disease.
The needs of the scientific, clinical and industry representatives were different from the patients’ needs. They prioritized being able to access the data incorporated into the atlas and they suggested different ways to do this: within the platform, by downloading the data or by getting the information from the data guardians.
The respiratory scientists wanted to know about any possible gaps in the data used in the Lung Cell Atlas and were interested in whether individual research groups could contribute their data to the Lung Cell Atlas.
Representatives from the pharmaceutical industry were interested in using the Lung Cell Atlas to help them design better ways of delivering drugs to specific parts of the lung and to speed up drug development. They were especially interested in the data that had been used to develop the atlas and whether it could be used to examine specific changes within single cells.
All user groups agreed that exploring the biology of the lung and its disorders is an important reason for wanting to access the Lung Cell Atlas.
The needs of the patient group and the needs of the groups representing respiratory science, medicine and industry were very different to each other. Because of the differences, both groups agreed that it may be better to create two separate portals to access the Lung Cell Atlas; one for patients and the pubic, and another for scientists and industry representatives. The functions that could be helpful for each group were discussed.
Patient representatives advised that clear illustrations and a step-by-step introduction to the anatomy of the lung would be helpful for them when using the atlas. They could then access the individual cell types and the changes caused by disease. The complexity of the atlas could slowly increase as the user gets to the more detailed parts of the atlas.
Other factors that the patient groups agreed were important included:
This group needed a design that would let them work with and analyse the data within the platform or to be able to download the data. They also wanted to be able to see the progress of the platform itself by seeing: the number of individuals, cells, locations and diseases covered by the atlas.
You can learn more about the DiscovAIR project by visiting their website https://discovair.org/
ELF is currently developing a patient and public portal for DiscovAIR on their website, you can read more about this in a future edition of the ELF newsletter.
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