Digital healthcare - a road paved with good intentions?

Digital healthcare - a road paved with good intentions? from Richard Stanton on Vimeo.

A treat for all those interested in the use of technology in healthcare, this is a lecture that Professor James Morgan, who leads the implementation of the open-source electronic health record, Open Eyes, gave in Cardiff earlier this year. You can find out more about the Science in Public series of lectures here.

Case discussion on Twitter: how can we make best practice explicit?

Image by quinn.anya

It's great to see the growth of discussion in medical education on Twitter. Recently I have seen a few really interesting cases being discussed (and a lot being learned), but there have also been some questions about how we together can think about what is best practice in leading these discussions.

Case discussions have always been a very important way of learning in medicine. And as one doctor said, junior staff are still encouraged to submit cases to journals, but it can take many months for a case submitted to a journal to reach publication. In the meantime, social media removes those barriers to publication. We can all self-publish. But we have to be responsible too. I think that all of the people currently involved in leading discussions are being responsible, but how do we make clear to others what best practices we are following? I think that it is important to consider this for a few reasons. First, we have an obligation to all patients to make these discussions safe. Second, we are modelling how to share these cases to other students and professionals.

We also need to think about whether the existing guidance, which in the UK is from the GMC, is sufficient to guide us.

So a few questions....

What should we tell patients about sharing their story? Do we need their consent if the story is not recognisable to others?
When the GMC discuss confidentiality the emphasis is on not sharing information (without consent) that would allow another to recognise a patient or someone close to them. In the new draft guidance on social media the only additional emphasis is on the impact of embedded information such as GPS co-ordinates that would allow us to know from where a tweet was made, or an image taken. 

My own practice is that if I want to share a story about a patient that might allow them to recognise themselves then I ask permission, and I record that when sharing the story. So far this has only happened once and it was in a blog post. How could it be conveyed that a patient was aware and happy that their story was being shared on Twitter? If this is done in a separate tweet then those following the tweets may miss it and wonder if permission has been given. Is this something we need to be concerned about?

What about sharing images routinely made as part of care?


In 2011 the GMC gave additional guidance on the audio-visual recordings. For some images made as part of routine care, such as pathology slides, internal images of organs, and xrays,  then no specific consent to take the images is needed. It is presumed that if the patient gives consent to the procedure then they give consent to the image being recorded. The guidances says that attempts should be made to make patients aware that they may be shared in an anonymised form, but there is no need to ask permission before doing this. This includes for publication in widely-accessible media such as press, print and internet. We can presume this includes Twitter!  

The draft social media guidance makes no additional comment on this so sharing an anonymised image on Twitter for teaching purposes seems acceptable. But images are rarely of much value without an accompanying story. So we are back to the situation above. How much permission is it good practice to obtain before sharing a story? And we have to remember that the real-time nature of social media means that a story about a patient might be shared as it is happening, rather than six months later, so that it is more likely that people may recognise themselves or others.

Other images that are made as part of routine care, but are not part of a procedure, such as an image of the outside of the body, do need specific consent to be given. And again patients should be made aware that these images may be used for teaching or research, but specific consent does not have to be given for them to be shared for this purpose as long as they are anonymised and all identifying details are removed. However, the guidance states that if the image is to be shared in widely accessible media (eg Twitter or a blog) then if the image is identifiable consent must be obtained. If the image has been anonymised then good practice is that consent should also be obtained but," if it is not practicable to do so, you may publish the recording, bearing in mind that it may be difficult to ensure that all features of a recording that could identify the patient to any member of the public have been removed."

What about recording an image to share in an educational discussion on social media?


The GMC guidance which applies here is the section on "recordings for use in widely accessible public media". Here, even if the patient is not identifiable, and has been anonymised, consent must be given explicitly. Paragraph 37 states:
"You must get the patient's consent, which should usually be in writing, to make a recording that will be used in widely accessible public media, whether or not you consider the patient will be identifiable from the recording"
We are also obliged to check with our employers what their policies are. Some trusts prohibit the use of mobile phone cameras by staff to protect patient confidentiality.

If consent has been obtained from patients to share their non-identifiable images online, how can we share that information in a tweet? Can we presume that if we see an image shared on Twitter then the person sharing it has followed the correct policies, just as when we see an image in a journal we might presume that the correct policies have been followed? Should those leading case discussions develop their own policies and make these accessible from their Twitter profile?

Medical education on Twitter is fantastic. There are no professional or geopgraphic boundaries to discussions. And no boundaries to patients participating either! I want to see all that is happening already continue and also for more people to get involved. I think that by considering these issues and showing how we can be safe and transparent we can take these discussions to a new level of participation.

Facebook and educators- "There be dragons!"

Do students use Facebook for social learning? YES! 

Yesterday was interesting. I listened to an interview with Jon Scott, a researcher/educator in Cardiff University about the need for social academic platforms- that would support collaborative learning, for example students working on group projects together, annotating documents, question and answer forums. Theoretically VLEs like Blackboard can support this. But either they aren't used this way or attempts to use them this way fail. The discussion that followed on Twitter considered that whatever platform was developed should be like Facebook. It should seem as easy to use. It should be somewhere that students wants to be and were anyway. Afterall as a student your social and academic life do often collide in any case. But then it was suggested that Facebook wasn't that easy to use. Most people didn't understand the privacy settings. They probably were not using it for academic work.

So I wrote a blog post asking students if they 'used' Facebook for learning and lo and behold they do!
The uses cover:
1. Private messages (as an email replacement?)- to ask close friends questions and to work on projects in a groups as documents can be attached.
2. The use of peer-led academic content groups where students can ask each other questions particularly in the run-up to exams.
3. Following pages from BMJ learning, eMedicine, medrevise to help with revision
4.The use of private (even secret) groups to work on group collaborative tasks by sharing documents. The notifications side-bar is particularly useful for letting students know when something new has happened.
5. For sharing information from face-to-face small group activities. There is no additional task to be shared but the content is useful to others.
6. Instant messaging! If VLEs were set up with instant messaging this would be a big win. It is one of the features that students like most about Facebook.

And why are people using Facebook?
-Privacy - this is a space that does not belong to the university so the chances that what is being said will be seen by a member of staff are reduced
-Accessibility- there is a lot less clicking on Facebook than in the VLE and it is faster than the VLE
-People are there- most people go in to Facebook every day. There is every likelihood that you will get a fast response to a query. This is in contrast to asking a question in a discussion forum to support learning on the VLE. As one student said; " if I asked a question on there, it would be as useful as talking to a brick wall as there's no one else on there!"

I also asked students if they felt pressure to be on Facebook in order to be able to keep up with peers. Would students miss out if they didn't have a Facebook account?

One student described how a colleague stopped using Facebook whilst they were in the middle of working on a project. That meant a lot more to-ing and fro-ing for the others in the group. Another student said that they weren't aware of anyone objecting to Facebook but if they did then they could manage as long as someone else kept them in the loop by sharing what was on Facebook.

There was also an interesting point made that some students thought that there university might not approve of the sharing of notes within these communities. The same might go for the sharing of exam questions. This reminded me of a post by Dave White on the Learning Black Market. 

Did students worry about their privacy using Facebook? Some did mention disliking the fact that they had to use Facebook but it worked. It was a trade-off they were prepared to make. 

If students use Facebook for social learning then should educators be there too?

Remember yesterday's blog post had emerged out of a discussion about whether an additional social academic platform was necessary and whether Facebook was already acting as that platform. It appeared that to a certain extent it is. The next question is should educators be there too in order to support the social learning that is taking place?

That conversation had been progressing rapidly in tandem! Alan Cann had started a discussion on google + about my post. His opinion " Allow Facebook to be a student owned space. if you want to set up groups to support learning, do it elsewhere". Now in ways this is a little surprising from Alan. His general mantra is "Build networks, not destinations." In Facebook the network is there! The students are there! Trying to take them to another destination that isn't about their network seems slightly doomed.

I'd come across a post by Cristina Costa titled "Why Facebook and teaching don't go together". She makes a few points here. Her strongest contention is that Facebook is not a pleasant organisation and that we don't know how or can not understand how they are using our data. If students wish to organise themselves there then that is up to them, but if educators have a presence on Facebook then they could be seen as giving tacit approval to Facebook. They might also be seen as encouraging students to set up a Facebook account. 

On the other hand, Natalie Lafferty shared a post that Donald Clark had written earlier this year giving 7 reasons why Facebook was posed to become THE social learning platform. But as Natalie pointed out, in a survey in Dundee University, there was a 50:50 split when students were asked if they wanted an institutional presence on Facebook. So the university held back.

At this stage I'd like to state that my attitude to Facebook is pragmatic. I have an account. It is personal. Nearly everyone that I am friends with are people who I have went to school with, worked with, met on holiday, met at university. Oh and family! We have a secret group where we can share pictures and videos and updates that we don't wan't to share with others.

But I have also used Facebook as an academic. I have been involved in using a Facebook group to help recruitment to a student research project. I've set up a Facebook page in the past to share content that I was already posting to Blackboard. A few hundred students liked the page. No one asked to become by Facebook friend and I didn't ask them to become mine. These uses of Facebook did not seem to present any kind of boundary confusion. It didn't stop students using Facebook to support their learning in the ways that they had already been doing.

"There be dragons!"

My fear is that as educators we have ended up demonising Facebook. And we've done this in a few different ways. 

Particularly in medicine, Facebook has been presented as a place where bad things happen and a challenge to professionalism. Have a look at the references on Pubmed. In the piece I wrote for the GMC in advance of the publication of their social media guidance I made the point that the reactions to Facebook seem to approach moral panic, when in fact most people are using it in very civilised ways.

All of this has meant that some, maybe many, students do not trust us to be anywhere near them on Facebook. Jon Hilton has left a great comment which illustrates that the very accessibility that makes Facebook great (2 clicks and you're there!) is also what makes it feel risky. What if a student posts a drunken photo to the wrong group? What if they say something about a lecturer that they wouldn't have said otherwise? Can educators be trusted to respond responsibly to those events? Can we? I would hope that we could. Mistakes are made. People learn. Students and educators both need to learn about digital literacy and digital professionalism, and I think it would be great if we started as we meant to go on and learnt together.

But what about the accusations that it is irresponsible to lead students to Facebook, or to give tacit approval to the organisation. This is a decision that educators need to make themselves. My instinct is that students have decided that they know they are the product. This is a free service and they are paying for it by handing over their information. But it is a trade-off that has value for them. They are prepared to put up with ads for topics they mention in passing. Being off the grid isn't really an option for them. Yes, we don't know how all this information will be tied together and made sense of in the future. 

I also sense that there is a fear amongst educators that their presence on Facebook will be desperately uncool. Private groups that an educator might set up in Facebook might be seen as 'creepy treehouses'. The concept of the creepy treehouse emerged in 2008 just as people were starting to explore the possibilities of social media for learning. But 4 years later how has our understanding shifted? Is it time to explore the opportunities of Facebook in a mature and confident way? Actually, Melanie McBride was arguing that we should do this back then:
"If we do not all venture into these spaces together – as a guided and pedagogically relevant tour – we will become even further disconnected from a student population who are being corporatized at every turn."

We have to be clear to not ask too much of any platform. Can Facebook work with the VLE? Could it be used to support specific pieces of work or just for a big private year group to answer student queries in the way that students are already using it? Any new uses of Facebook by educators shouldn't step on the toes of students who are already doing a great job. 

And because I like to put my money where my mouth is, I decided last night to start a Facebook group to try and learn together with Cardiff University students how we could use technology/elearning better in the course. This could have been done through the VLE. I could have set up different forums for each year group. The students would have been less certain about who was reading their posts. The first thing I posted was the YouTube above which gives quite a very negative view of Facebook. The next item I posted was this screencast about how to check how your timeline looks to members of the public.

Is it time that educators started making timid expeditions into the scary land that is Facebook? What do you think?

Should the NHS be on Yahoo Answers?

Last week Leigh Blackall and I agreed that patients needed access to high quality information on the internet but we disagreed on how that would happen. He mentioned Yahoo Answers and I and many of those I know on twitter responded sceptically. Why would ANYONE look to Yahoo Answers??!! But my experience of looking for information online is most often centred around knowing the diagnosis. If you are trying to make sense of your symptoms then it is a whole different ballgame. So I decided to make a short screencast to show what the experience might be like.
What should we do about this? Make the existing NHS websites more user-friendly when checking symptoms? Develop better tools for symptom sorting? Make sure that the relevant NHS pages are serach optimised? Or should the NHS be patrolling Yahoo Answers?
I'd love to know your thoughts and feel free to share any stories. But remember this is a public site and others will be able to read it after you!
EDIT: After Fi's comment below I feel I should add that I think it is unlikely that patients will find a diagnosis online but they should in a sense get good triage information. Is this a serious symptom that I need to go to the doctor with, or can I leave it for a few months to see if it goes away?
I've blogged about fear of Dr Google before. We should be helping Dr Google to perform better, and we should be able to give guidance to patients on where they can get sensible information online.

Information Literacy Teaching- Sabotage!

Today in a tutorial I met one of the students I spoke to last summer when doing the first year portfolio reviews. I mentioned that I had blogged about how he and other students used social media, including YouTube and Wikipedia.

He then told me a story about a teaching session they had on information literacy. They had been asked to compare an article on Wikipedia with a review paper on the same topic from an academic journal. The session aimed to show the inaccuracies of Wikipedia and how it could not be trusted. But this student sabotaged the exercise. He demonstrated that the essential quality of Wikipedia is that it can be edited. Before most students had got round to the piece of work, he went into the Wikipedia article and improved its quality by updating the content and referencing the article!

He says that the organisers were not too happy, but I'm sure they were. He had demonstrated:

• Wikipedia is always changing
• It can and often is a good source of information if we all contribute
• Medical students CAN be Wikipedia editors.

Well done!