Sara Ryan is a learning disabilities researcher. She is also a mother. She kept a blog about the joy that her son, Connor, who was affectionately called LB (Laughing Boy) brought into her family's life. Last year, Connor became unwell and was admitted to an assessment and treatment centre. 107 days later he drowned in the bath. He had epilepsy and Sara had noticed an increase in his seizures and alerted staff. But he was allowed to bathe unsupervised. Now her blog is about what Sara is learning since his death.
This is Sara talking about LB and the campaign for #justiceforLB.
Today's post on Sara's blog is about the memo that was circulated the day after Connor's death by the communications department of the health trust, to brief staff about Sara's blog and provide a summary of posts with the aim that it might "help in shaping a tailored media response". Sara obtained this memo today through a Freedom of Information request. It details how Sara's blog had been monitored by the comms team from as soon as they were aware of it in March 2013 shortly after his admission to the unit. It specifically mentions this post in May 2013 just over half way through Connor's admission, where Sara described her distress at realising that Connor had a seizure but not being able to convince the staff that this was the case. Last week Sara was told by the Chairman of the Board that there had been no monitoring of her blog.
Four years ago there were blog discussions in the UK about the ethics of monitoring social media. There was a particular case of a patient who had had a renal transplant, described here by Dan O'Connor. I made comments here, and in another blog (it was on posterous but hopefully has been rescued and is retrievable elsewhere) that I thought that health organisations should not monitor social media unless they had clear policies agreed by staff throughout the organisation on what they would do in various scenarios, including if a matter came to attention which needed clinical input. I think that Sara's post in May describing Connor's seizure is such a post.
If a health organisation is monitoring social media they should consider in whose interests they are undertaking this monitoring and how they will respond to posts like Sara's.
Connor's death was a tragedy. As the independent report into his death found, it was preventable. This should never happen again.
Link: An excellent post by Tim Turner on the data protection aspect of this social media monitoring.