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New community launches for those with pancreatic tumors

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New community launches for those with pancreatic tumors

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Social media is a natural home for people wishing to share their thoughts and feelings, and of course to find out important information.  So it seems only natural that people would flock to social media for healthcare related issues.  Research last year revealed that 60% of us go online when we’re unwell in a bid to find out more information.  This search is increasingly including social media as well as more official online health resources.

There are already large healthcare communities online, such as the Smart Patients community for cancer sufferers, whilst here in Britain HealthUnlocked is providing a general purpose health community that’s supported by the National Health Service.

Joining the throng is a new community for people with Pancreatic Neuroendocrine Tumors (PNET).  The community aims to provide a support network for patients and caregivers to share information and support.  Group members discuss such topics as practical tips for the newly diagnosed, chemotherapy and targeted therapies, and surgical options.

Of course, communities are not just for talking about your condition with strangers.  Sites such as CrowdMed are aiming to crowdsource the diagnosis process.  The site lets users diagnose the symptoms of members of the site, who are then presented with the top three suggestions from the crowd.  Suffice to say, it isn’t designed to replace the doctor, but more to provide a possible second opinion.

Suffice to say that not everyone is excited about these developments.  Earlier this year Deborah Lupton from Sydney University wrote a paper on her fears that healthcare communities are turning our data into commodities that they can sell to the pharma industry.  Even if data isn’t being explicitely sold, drug companies and health insurers are no doubt mining communities for information.  Earlier this year it emerged that GlaxoSmithkline were scouring the social web for information about vaccines.

Indeed, the PNET community is sponsored by Novartis, but it isn’t clear quite what their sponsorship entails, and what they get out of their involvement.  Only yesterday, the companies Afinitor drug was refused approval by the NICE regulator here in Britain, despite having over $750 million in sales worldwide.  The drug was deemed not to deliver value for money by the regulators.


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