A new bank of open data regarding attitudes to health, with input from 4,000 UK participants, has been published by the collaborators of the Live:Lab project. By playing a gamified quiz ‘Crush your FOFO’ users anonymously answered questions that determined if they had a ‘fear of finding out’ or FOFO. The full report, and accompanying notes have just been published and the raw data has been made available for anyone to access, share and use.
The Live:Lab project was launched by global pharmaceutical company AbbVie in October last year, with data specialists such as the Open Data Institute and data science company Satalia, health experts, gamers and filmmakers among the collaborators. It was set up to tackle the psychological barriers as to why people might avoid or delay seeking medical advice despite having worrying symptoms.
The findings revealed that one in four people said they have delayed seeing a doctor because of anxiety around being examined, while 22% said that they have anxiety about the treatment that might be required. The same percentage (22%) said they were worried about the effect a diagnosis would have on friends and family and 18% said they were worried that they would be pressured to change their lifestyle.
"This sort of data is really important to produce an evidence base."
Simon Bullmore, associate at the Open Data Institute told DataIQ: “The ODI was engaged because it was felt that this sort of research and data is really important to produce an evidence base behind what essentially is a psychological issue. And we also felt that releasing the data openly would allow more people to engage with the data and generate insights.”
"Opening up data was a bold step for pharmaceutical company AbbVie."
He said that opening up data was “a bold step” for AbbVie to take as a pharmaceutical company, as doing so has traditionally not been common in any industry sector that hasn’t been obliged to do so. “Open data is data that anyone can access, use and share for any purpose and it is that ‘any purpose’ bit that sometimes worries organisations. They worry there might be mistakes in the data or that they are going to be revealing something important, so while it is becoming more common, it is still relatively uncommon in the sector.”
"Open data is the most useful form of data."
Bullmore expounded the benefits of open data, stating that it is much more valuable when it can be accessed by many than when it is closely guarded. He said: “There’s lots of evidence now that open data is the most useful form of data in lots of sectors. A good example is the travel sector and all the apps that have grown up around the transport data that TfL have released that allow us to navigate.” He added: “Data is taking us to interesting places so the more there is of that and the more people can access and use it, the more you are likely to get of it.”
In Bullmore’s view, if a company’s intentions are good and there is value in opening data, there can’t be downsides to it. However, they must take into account ethical issues and make sure that privacy is protected and that data is properly anonymised.
"By releasing data you get more people to come at it at different angles."
With the data set that has been published, Bullmore would love to see students and researchers analysing it and possibly developing solutions to problems. He said: “The wonderful thing that we've often seen when people release open data is the surprising things that people do with it, and that's the beauty of creativity and insight. By releasing the data, you get more people to look at it and come at it at different angles.”