New sources of data, such as internet browsing information, have a significant impact on everything from politics to fashion trends but can this new data help healthcare? And, if so, how?

Orion Health’s Analytics Line of Business Owner, Jeff Turpin, investigates behavioural data in the first of a series of blogs focusing on non-traditional data and its potential impact on healthcare.

Behavioural data

In its most basic form, behavioural data is information that is resultant from a person’s actions. Its popularity as a non-traditional source of information is largely due to its commercial application and ability to be easily generated by smartphones, tablets, and computers. 

Behavioural data’s commercial use is largely derived from website cookies, small files which are automatically downloaded to a user’s computer while they browse the internet. The files help websites to recognise users, track preferences, and develop profiles around a user’s online behaviour. Once a cookie has been downloaded, insights can be gathered by tracking a user as they continue to browse the internet. Details of every link they click and every second they spend on a page has commercial value, largely to online advertisers who use the information for targeted advertising. If you’ve ever searched for a product online and then seen advertising on other websites for similar products, then you’ve experienced this first hand.

Behavioural data could also have a significant impact on healthcare in the future, especially when combined with traditional sources of data, such as clinical and episodic data. Population health programs often look at a patient’s habits along with their medical history. Being able to analyse a patients on-going behaviours and moods through their interactions, posts, shares, comments etc… on social media channels could provide unparalleled insights into a patient’s wellbeing. These insights could be taken from internet searches centering on different symptoms of sickness or social media posts about depression or anxiety.

Leveraging modern technology, such as machine learning, could help with co-ordinating care and striving for better outcomes through prevention. There is a lot of scope with behavioural data and a lot of interesting opportunities for healthcare providers.

While utilising behavioural data could have a number of positive outcomes, it could still introduce a number of dilemmas. There are significant law and privacy concerns regarding how developers handle informed consent – this is not like a patient going into a doctor’s office and signing a form where they agree to share health information. For instance, if a patient gives broad consent for one area there is the possibility that it could open the floodgates into other parts of their life, so it’s important that lines are drawn before behaviour data is capitalised on. 

Privacy is a loaded discussion. Many consumers are quick to freely offer up private information in return for a service–such as social media accounts–with little understanding of what that entails; this has led to disputes. A good example of this is the on-going furore between Privacy Advocates and Facebook.

While consumers are correct in thinking that they ‘own’ the intellectual property (IP) they post to the social media network, including photos and video, many do not realise that they have effectively “signed” a form that gives the social media giant a broad license to make use of a user’s IP however they chose. 

Facebook Terms and Service:

You own all of the content and information you post on Facebook, and you can control how it is shared through your privacy and application settings. In addition:

  1. For content that is covered by intellectual property rights, like photos and videos (IP content), you specifically give us the following permission, subject to your privacy and application settings: you grant us a non-exclusive, transferable, sub-licensable, royalty-free, worldwide license to use any IP content that you post on or in connection with Facebook (IP License). This IP License ends when you delete your IP content or your account unless your content has been shared with others, and they have not deleted it.
  2. When you delete IP content, it is deleted in a manner similar to emptying the recycle bin on a computer. However, you understand that removed content may persist in backup copies for a reasonable period of time (but will not be available to others).

The “royalty-free worldwide license” means the company can use your photos as they wish without compensation or permission and “transferable” and “sub-licensable” mean that, without a user’s permission, Facebook can either transfer the license or even sub-license the IP to another party. 

All of these terms are broad and have been interpreted in many different ways but ultimately they allow Facebook to function in the way it’s users want it to ie. being able to share photos with friends. However, the loose terminology has left this topic open to interpretation and the numerous public outcries show that approaching the issue of privacy, even when consent is given, can be tricky and should be handled with care.

There are significant benefits to utilising behavioural data but there are also many socio-economic hurdles to overcome before it can be applied more broadly, and these conversations have only just begun.