The ethics of health organisations monitoring social media...#justiceforlb

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.

Twitter for a/e triage?

Social Media Monitoring in Healthcare

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One year ago a story was shared on the nhssm (NHS social media) blog. The story was about what happened when St. George's trust in London started monitoring Twitter for mention of their name. Social media monitoring is a practice that is becoming increasingly common for businesses and it is not surprising that there is increasing discussion about this in healthcare.

Generally talk about the use of social media in the NHS tends to be driven by people who work in communications teams. This is evident from the programme of the first joint conference between NHSSM and Guardian healthcare, Social Media in Healthcare. None of the presenters are from a clinical background although I believe that another conference is possibly being planned. It is my belief that clinicians (doctors, nurses and other health professionals) and patients should be involved in developing social media strategies for any healthcare organisation.

Back to the St. George's story. When the team started monitoring they came across tweets from a patient who had recently had a renal transplant. Something in his tweets concerned the communications team and because no policy had been devised on how to handle a situation like this they were uncertain what next steps to take. Eventually the patient's clinical team were made aware of the patient's tweets. The patient only became aware of all of this when his consultant mentioned the tweets to him in a consultation.

The story provoked a lot of discussion with 39 responses and a follow up post by Dr. Dan O'Connor on the ethics of social media monitoring in healthcare. I urge you to read both of these posts and have a look at the comments. I've made several comments on both.

Generally I have not come across a lot more discussion of this topic in the last year. I'm not sure if many NHS organisations have developed policies on social media monitoring and I'm not sure how many have involved clinical staff or patients in developing these policies. In fact, I might not have thought a lot more about this if I hadn't attended a breakfast meeting at Evidence 2011 by Ben Breeze of Dell. He talked about how individual members of staff, outside the comms team as far as I understand, were being trained to represent the organisation.

So I am wondering what you think about this. What would be gained from an NHS organisation monitoring social media for mention of their name? Who should be involved in developing policies? How should clinical staff be involved? What are the risks and benefits?