Warning that online health forums may share personal details

Many people do not realise what happens to their data because they fail to read the terms and conditions or the privacy policy of the website.

People who join online health forums and share personal health details are often unaware that pharmaceutical companies, medical researchers and patient advocacy groups may have access to the information — a pitfall researchers at University College Cork (UCC) are seeking to address.

An ongoing project investigating the area of digital consent for patients using social media platforms (SMPs) has found many do not realise what happens to their data because they fail to read the terms and conditions or the privacy policy of the website.

“You might choose to share data in a different way if you knew it was going to be used for a particular purpose,” said Dr Ciara Heavin, one of the researchers conducting the CHASM Project (Consenting HeAlth related data through Social Media).

As part of their investigation, Dr Heavin and Dr Yvonne O’Connor from the Health Information Systems Research Centre (HISRC), UCC, set up focus groups to measure awareness around digital consent. Participants registered with a popular health SMP using a mock profile.

“We observed how they shared their information and whether they read the privacy policy,” said Dr Heavin. 

“The site they were looking at is visited by hundreds of thousands of users/patients on a regular basis but all of our group did not open the terms and conditions or the privacy policy. The site is designed in such a way, that the user doesn’t have to.”

In fact many SMPs have a “just click ‘yes, I agree’,” approach Dr Heavin said. 

The upshot was while a privacy policy may state that their health information can be made available to a third party, the user remained unaware.

There are advantages to participating in health social networks, said Dr Heavin.

“If someone has a chronic illness and is engaging with a like-minded community, it can be good for emotional support or to hear about treatments others have benefited from.”

However, participants needed to be aware of where data ended up. To this end, the researchers are looking at providing “more meaningful ways of discovering what is contained in the terms of conditions” beyond the “jargon-heavy online patient consent forms”.

The next step was to build short animations to make terms and conditions and privacy policies more accessible, Dr Heavin said. 

This will involve 90-second videos which the focus groups will view to see if they encourage greater engagement around T&Cs and privacy statements. 

Dr Heavin said the aim was to identify best practice design guidelines targeted at software developers of social media technologies “and strike a balance between data openness and data privacy”.

The UK-based Wellcome Trust has provided €115,000 towards the research.

The CHASM team will host a “Crossing the CHASM to Digital Health Data” workshop as part of the European Technology Assessment Conference at UCC (May 17-19). 

The theme is New technologies and societal challenges: Bridging the worlds of science, society & policy making.

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