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 In the new draft guidance on social media the only additional emphasis is on the impact of embedded information such as GPS co-ordinates that would allow us to know from where a tweet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.

Why I think I am a patient and not a consumer.

In August I was having a great time at the Greenman festival in South Wales when I slipped and fell backwards when dancing. I broke my radius (and my ulnar styloid process). The fracture needed internal fixation with k wires and I had to spend two nights in hospital.

The next day after discharge my husband and I returned briefly to the festival... well, we had to pack up the tent! In the picture above I am sitting in a near empty comedy tent in between acts. This was my first few hours back in the real world. It was a Sunday evening and I had to let my doctor colleagues know that I would not be coming in to the practice. I was figuring out how I would cope with not being able to drive for several weeks. Soon after I went on holiday to Co. Kerry and watched on as the rest of my family set off for a day hike up Ireland's highest mountain.

My wrist got more painful and my next hospital check showed that the wires were pressing on my skin. Moving my thumb became very painful and I worried that I had ruptured my extensor pollicis longis tendon (a rare complication of Colles fracture) and was glad to be reassured that I hadn't. I googled to see if I could find an explanation for the pain in academic literature, or in the blogs and forums of others who had had a fracture like mine. But I didn't find anything. One night the pain in my arm woke me from sleep and I lay for a while half-crying before I remembered that the solution was to take more painkillers.

I wondered if I should return to the clinic early but I knew that I had been told that the wires couldn't really be removed before four weeks so I just had to wait it out. Two weeks after that the cast was removed and I could start exercising to conquer the stiffness that immobilisation had produced. I am still under the care of some excellent hand therapists. Tomorrow morning we will document how successful I have been in getting back to normal.

Whilst my arm was in the cast I did not see patients. I worked in the university but I felt too much of a patient myself to act as a doctor. But what do I mean by patient? I hadn't really thought about the term too much myself until I started seeing people use it in a way that I didn't recognise.

Last week the E-patients Connections 2009 (#epatcon) conference took place. Although it used the word e-patient in the title, the strapline made clear that this was about how to "reach, engage, educate today's digital health consumers". Consumers not patients. There were patients speaking there. ePatient Dave talked about how companies wanting to connect with patients should be authentic. Kerri Sparling (from Sixuntilme- a fantastic blog about her experiences of living with diabetes) wrote "It's a strange dance, watching people who are living with different health conditions in the same room as marketing teams and pharma companies and people who might view us as "consumers.""

The day after #epatcon I lamented that the only consideration of epatients at the conference had been as a consumers, and that perhaps there was no-one to fund a conference to look at the "real experience of patients". Jonathan Richman replied "I don't get it. What's the diff between 'consumers' & 'real patients'. They're the same ppl, just a diff word."

So is the word important? I have been recommending a book by a Dutch philosopher Annemarie Mol, " The Logic of Care: Health and the Problem of Patient Choice" in the past few months. Some of it is available here on Google books if you want to look before you buy (and you can read a great post by Ken Bottles on his thoughts about this book here). She describes how the response to the medical paternalism was an undue focus on patient choice as part of a consumerist model of healthcare. She is not opposed to patient choice and neither am I when it is appropriate but it is not sensible for it to be the focus of all interactions in health. It also implies that there may be a choice when there is not. Mol's study is of patients and professionals working with diabetes and some of her points resonate with another recent post by Kerri on Sixuntilme. Kerri talks about the guilt that is inflicted on those with Type 1 diabetes when they are made to feel that any deterioration in their illness is due to bad choices that they have made, and not to the disease itself. As the prologue of Mol's book states, she concludes that "good care is not a matter of making well-argued individual choices but is something that grows out of collaborative and continuing attempts to attune knowledge and technologies to diseased bodies and complex lives". Diseased bodies and complex lives.

So if consumer is not a good word to describe the experience of someone living and dealing day to day with a disease or disability, is patient any better? Patient as an adjective is defined as "bearing or enduring pain, difficulty, provocation or annoyance with calmness. It is only perhaps the "with calmness" part which is not appropriate. I often felt not very calm as a patient for a number of reasons. But this definition captures more of the root of the word "to endure" than does the most common definition of the noun "one who receives medical care, attention or treatment". When patients go online today to tell their story they don't just talk about their experiences of healthcare. That is just one part of dealing with an illness. There is another whole world outside of the hospital, doctor's clinic and medicine cabinet that must be negotiated. And that is what epatients tell us about. It is what I wanted to learn about when I searched for the stories of others who had endured a Colles fracture like me.

Some think that other terms such as survivor are more appropriate. I feel that I endured my wrist fracture rather than survived it, and I feel the same about other experiences of patienthood which I will not share here. Epatients tell us about how to endure and survive illness, how to collaborate with the professionals who care for us, and how to actively participate. The don't tell us about how to consume.

How do you feel about being a patient? Do the words matter at all?

How can we involve (e)patients in medical education?

I have some ideas about this but I would really love to hear from (e)patients.

How do you think you could contribute to medical education? Do you think that students and doctors could learn from reading the blogs of (e)patients or seeing what the hot topics are in discussion forums? How would you feel about letting a medical student take your history in Second Life? How can we help medical students develop the skills to support patients negotiate the online world?