Ethical responsibilities of leaders of tweetchats?

That way by justinbaeder
Over a year a go, Natalie Lafferty and I hosted the first #meded chat on Twitter. Ours was between 9-10pm UK time, and 5 hours later a similar chat was held for participants in the US.

We had some really great and very wide-ranging discussions. In the UK we had a lot of participation from students and doctors in training. This made for particularly rich and informative debates, for example on portfolios and competency. Over the summer we wound the chats down and didn't get them started again, although the US chat has kept running. But thanks to some calls on Twitter we have got some momentum building again and it looks as if our first session will be announced soon.

In advance of this I wanted to clarify what someone who participates in these chats could expect. I am not so interested in etiquette. We didn't really have any problems before, and participants seemed to be relatively sophisticated users of Twitter, so saying 'be nice' would seem to be a bit superfluous, and a little prissy.

But there are some other issues that I think we should address. The first is the issue of archiving. Anyone can archive anything on Twitter, but I think we should be clear with users that we ourselves will be archiving tweets and the implications of that. Up to now we had been using Symplur's archiving tool but we need to check whether individual tweets can be removed if they breached the confidentiality of patients or others. Again this did not arise before, but it is a serious enough governance issue that I think we should draw attention to it.

Next is the issue of research. As we are forming a community with the participants we would not consider researching the community without making participants aware. However, others outside our community might make us an object of research without making us aware. We can not do anything to stop that but we can make participants aware at least.

So given all that, here is a first draft. It is a fully editable document so please leave a comment here or directly on the document. What else do you think we need to add?

Would you block your patient on Twitter?

Road Block, a photo by PSP Photos on Flickr.

@amcunningham I see the logic of not being friends on FB, but if a pt. follows you on Twitter, should you block them?#DifferentPlatform
— WelshGasDoc (@welsh_gas_doc) February 6, 2012

This question came about because I had tweeted a link to some research which had shown that 1/3 of practicising physicians, who responded to a survey (with a 14% response rate)  and said they used Facebook , had been issued with a friend request by a patient or their carer. This was much higher than the level reported in more junior doctors and medical students.

So should doctors refuse friend requests from patients? I have never had a Facebook request from a patient but if I had I would explain that I keep that account for close friends and family. A Facebook request can just be ignored which is an essentially passive act.

But I wouldn't block a patient from following me on Twitter. My Twitter presence is not orientated towards patients but I don't think that they would find anything shocking or surprising in my tweets. It would give them an insight into what I do when I am not in the practice. I consider that patients, or colleagues or students might read everything that I write here or on Twitter or anywhere else publicly online so I wouldn't worry about that.

A few people did think that patients should be blocked however. We discussed that this wouldn't necessarily stop them accessing the tweets as one only has to look at the profile instead. And blocking someone on Twitter is quite a hostile and aggressive act. I think I would find it hard to explain why I was doing that. One doctor said that he had blocked a young, female patient from his Twitter account because he wanted to set clear boundaries.

Another option, as the BMA guidance on the use of social media suggests, is to consider protecting your Twitter account and only allowing approved followers to see Tweets. In my experience the vast majority of doctors in the UK do have public accounts and I don't know if patients accessing tweets is a factor for those who choose to protect their accounts.

And how would I respond to a patient asking me for information on Twitter? Say they asked me where was the best place to find information about diabetes? Well, I would reply and point them to some good sources of information. And what if they were to ask me about their medical condition? If they were following me I would send them a DM advising that I can't give medical advice on Twitter but to get in contact with me in the surgery. I'd also advise them that their tweets are public and that that they might want to be careful about sharing sensitive information so it might be best to delete them. Normally I wouldn't send a DM to someone who I was not following as they would not be able to reply. But I think that in this case it might be the easiest way to deal with the situation. I wouldn't feel comfortable talking to a patient about a medical problem in 140 chtrs even if they were private messages. Essentially, I would treat a patient no differently to any other person I meet on Twitter. And since many people do not use real names on Twitter, and I have no way of remembering the names of all the patients registered with our practice it would be an impossible task to block all patients anyway.

I wouldn't follow my patients on Twitter. But perhaps I will change my mind about this. Perhaps following people from the area could give me better insights into what it is like living in the area and how I might be a better advocate for the community. Have no doubt however that the digital divide is real. A few weeks ago we were having a #nhssm (NHS social media) discussion on using video services such as Skype with patients when Evan Hilton, the executive director of Gofal, the Welsh mental health charity tweeted about the issue of digital in/exlusion in the South Wales valleys. He followed it up with this statistic:

@buzzumi @amcunningham in context of community based mental health services @gofal_ less than 10% of service users on line at home
— Ewan Hilton (@EwanHilton) January 18, 2012

Our patients face many challenges (often beyond their control) in staying health or living with illness. We haven't yet figured out how social media can be best used to help them but perhaps there is a case for not putting more blocks in the road. What do you think?

My thoughts on Health Professionals and Social Media

Health professionals and social media

View more webinars from Anne Marie Cunningham.
What do you think? If you are short of time you may wish to skip to slide 16.
EDIT 29/9/2010 : At 6min10sec I refer to 'social marketing' when I actually mean the use of social media for marketing. "Social marketing" is a different concept and is well explained here. Near the end when I talk about the possible public health benefits of using social media to influence social networks, this would be a true use of 'social marketing'.