Medical mistake

Medical mistake
Originally uploaded by Lobke van Aar

What does this image mean to you?

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?

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!

The BBC responds.

A week had gone by and there was no response from BBC Education News to my email informing them of my blog post "Tech addiction 'harms learning' .....really??? $24.99 and I am no wiser". I probably would have left it at that.

The post was about an alarmingly titled BBC online news story on a study set in an English secondary school, that could only be accessed by spending $24.99. I did buy it and I used this blog to inform others who were interested but didn't purchase it. My finding was that this was a piece of poor research, done by people without backgrounds in education, and presented in a way that suggested that any peer-review process it had been near was 'light touch' in approach. In short, this Sigel Press "Special Report" didn't live up to the publisher's claim that it would contain "groundbreaking information", be "written by global experts", and be an "indispensible resource[s] to keep you up to speed in your field." For the record, my field is not secondary school education. I am a doctor and a university teacher and researcher. I maintain this blog as a way of connecting with others in the wider education community. Several of my past posts have criticised the methodology of peer-reviewed research on the use of new media in medicine; research which has been more or less reported in a positive way. I make it clear on this blog that I don't support the use of technology "for the sake of it", to the extent that I have on occasion gained the moniker "web 2.0 skeptic". And if there was evidence that the use of the internet or other tech really did harm learning, I would want to know about it. I'm not a push-over.



I emailed BBC Education News because I thought that anyone who had the report in their hands would have reached the same conclusions as me. I emailed Cranfield University PR department as well, and they thanked me and said they would pass my comments to the authors immediately. I didn't really expect to get any responses.



But Paul Bradshaw wasn't happy. He is a senior lecturer in journalism at Birmingham City University. He had emailed the BBC Education department as well and today he started chasing for a response. On the off chance I emailed the BBC again and 30 minutes later there was a reply to the email sent a week earlier. This is from Gary Eason, the BBC News website education editor:

"Hi Anne Marie
Thank you for your thoughts. The author of the article did have the whole report in front of her and interviewed one of the authors. I do not agree that our headline is "sensationalist".
best wishes
GE"

OK, we can agree to disagree I suppose. But then I saw Paul's blog post about the matter. His interaction with Mr. Eason was considerably longer and contains the following quote:

"It seems to me the results don’t fit her world view so she sets about rubbishing them. Is she seriously arguing that ‘cut-and-paste plagiarism’ is not a problem?”

Spot the logical fallacies. This study was not good science and should not have been reported by the BBC. My worldview has nothing to do with it and is simply a red herring. In any case as I have pointed out above, I am not dogmatic about the place of technology in education. I look for evidence to inform me about what we should be doing.

Next , we have the straw-man attempt to rubbish my blog post. I made no comment at all on whether plagiarism is a problem. All of us working in education know that this can be an issue if assessments are designed badly. But my argument was that this research told us nothing about the relationship between learning and 'addiction to technology'. It possibly could have done as the researchers had data which could have been analysed to tell us something about this. But they didn't. Yes, it was a small study with a dubious response rate but they failed to make the best of the data they had.

Tom Morris comments on Paul Bradshaw's blog that this is a "perfect example of a glaring editorial problem". I think I agree. What do you think?

Email to BBC News Education Re: Tech Addiction "Harms Learning"

Dear BBC

I was disappointed when I read this article as I
could immediately see that the research was likely not to be of good quality.
But I was more concerned that you had managed to construct a sensationalist
title to go along with it. A cross-sectional study could never establish the
kind of causative relationship that your title infers.

I paid $24.99 to download the full report and my suspicions of poor
standards in research were supported. Did the author of this article actually
read the report or simply base their story on a press release from Cranfield
University?

Since this report is not freely available to the public, I think that the
BBC, a publicly funded body, has an even greater onus to ensue high
quality reporting of such 'research'.

Here is my blog
response.

Yours faithfully,

Anne Marie Cunningham

.......................................................

So how do we go about starting a campaign for decent science journalism on the BBC?

Tech addiction 'harms learning' .....really??? $24.99 and I am no wiser

EDIT 11/12/09 This post has been nominated for an Edublog Award for "Most Influential Blog Post" You can vote here. Thank you to Sarah Stewart for her nomination.

Last night, I started noticing tweets about this BBC News Education story in my twitter stream. Researchers at Cranfield University had published a report "Techno Addicts: Young Person Addiction to Technology" about a study they had conducted where 267 secondary school pupils completed a written questionnaire about their mobile phone and internet use. Included in the BBC story is the statistic that 63% of respondents 'felt addicted' to the internet and 53% 'felt addicted' to their mobile phoneThe BBC headline ("Tech addiction 'harms learning'") suggests that the researchers have established a relationship between this feeling of addiction and poor learning. In fact, the headline suggests a causal relationship which a cross-sectional study could not establish, but the body of the text doesn't really support any relationship between addiction and learning.

I wanted to know more so I set out to find and read the report. Googling the full title pulled up a link to the Sigel Press site where the report could be purchased for $24.99. And a press release from Cranfield university confirmed that this was the only way to get my hands on it. It also was clear that none of the authors had an education background. The 2 main authors, Nadia and Andrew Kakabadse, have a blog showcasing their many interests but education doesn't feature amongst them. They descibe themselves as "experts in top team and board consulting, training and development". I bought the report.

I expected the report by university academics to follow a standard format but it doesn't. It is 24 pages long and contains no references and no appendices. The survey instrument is not included.

Mainly it consists of charts illustrating question responses. Unfortunately it contains some typos and poor grammar.

No response rate is given, although we are told that the single school contained 1277 students and that there were 267 respondents, so it may have been as low as 21%.

With regards to 'tech addiction' this seems to have been a self-assessment based on response to the question: How addicted are you to the internet or your mobile phone? The proportions given in the BBC report are those who stated they were 'quite' or 'very' addicted. Of course, we don't know what the students meant by 'addicted'.

With regards to this addiction harming learning, there is no analysis relating the perception of being addicted to outcomes in learning. In fact very few of the questions are related in any way to learning.

It is hard to understand several sections of the report because of lack of access to the questionnaire. For example, with regards to plagiarism the authors state that "A high proportion of students (84.3%) openly admitted that they inserted information from the Internet into their homework or projects on a number of occasions." The tone of this sentence reflects some of the bias which is found throughout the work. The authors don't seem to be aware that if referenced it is acceptable to insert information from the internet into work, so the students would have no reason to be ashamed and fear 'openly admitting' this. The finding that 59.2% of students have inserted information into work without reading it is more concerning. It is also reported that 28.5% of students "feel it acceptable to insert information from the Internet straight into schoolwork without editing or making adjustment, recognising that such behaviour is considered plagiarism." It would help a lot to see how that question was actually worded in the survey, as in the figure it is simply represented as "Ok to “insert” information from the Internet straight
into schoolwork- Yes/no". That's not quite the same!

But there is no analysis relating amount of time spent online (or perception of addiction) and likelihood to insert internet contents into work without reading it. It may be that those who spend less time online, have less skills in information literacy and are more likely to plagiarise.

In summary this report tells us very little about internet addiction or learning. Do you think that someone writing for the BBC website actually read the report? Many of those who tweeted about the BBC article thought there were no suprises in the findings, and that perhaps it suggested that teaching methods needed to change.

This evening Ben Goldacre and Lord Drayson were debating the state of science journalism in the UK. I wonder why do the BBC give space to research which is so poor? How did they manage to concoct such an alarming headline? And why do people believe it? Is it because as one person responded to me last night, there is the perception that "U may fault methodology, results true".

And the quotes from the authors are not even results, just their thoughts which may chime with readers. But it's definitely not science.

Image: "Playing with the new baby cell phone" http://www.flickr.com/photos/cwinters/2150107228/



EDIT: You can read the BBC response to this blog post here.

Apologies for quietness

It's 2 months to the day since my last post. First there were holidays and then I broke my wrist. I was whirling round in a dance tent at the Green Man festival and then suddenly I wasn't. I was rushing backwards towards the ground and put my left hand out to save myself.

I think a broken wrist is a pretty good excuse for a blogging hiatus, though my story is not quite as dramatic as Stephen Fry's.