Patient narrative- leading to transformation

Last week I came across two great papers by Arno Kumagai. He is an associate professor in the department of internal medicine in the University of Michigan. There they have a programme for first and second year medical students, the Family Centred Experience, which is similar to Cardiff''s Family Case Study.



The first paper " A Conceptual Framework for the Use of Illness Narratives in Medical Education" recognises that learning through patient narratives is often marginalised and considered 'soft' in medical school curricula. This was a point that I attempted to make recently.



He introduces a conceptual framenwork, whereby narratives are seen to help contribute to transformative learning. This is a wonderfully powerful idea where " The doctor-patient relationship changes from subject-to-object communication to intersubjective communication and action: the patient is no longer reified as an object to be worked on but an active subject to be worked with."



Unfortunately I read Arno's paper after my post on online narratives, so I emailed him to ask him his opinion.

"Dear Arno,
I just wanted to say how much I enjoyed this paper and the more recent one on patent narratives in diabetes. I wish I had read them before I wrote the following blog post! http://wishfulthinkinginmedicaleducation.blogspot.com/2008/12/patient-narratives-in-medical-education.html
I was wondering if you have any thoughts about how we could incorporate online patients voices into medical education. The world of health 2.0 is getting bigger and possibly better. It means that we can let students have access to many more experiences than in the past... particularly with regards to under-researched topics, or particularly stigmatising conditions.
I am sure you are very busy but if you have time to drop me a line I would be very grateful.
Happy Christmas,
Anne Marie"



He was very kind and replied at length:

"Hi Anne Marie:
Many thanks for your kind note and apologies for my delayed response. With the upcoming holidays, it has been a bit difficult to find time to quietly chew over your thoughtful insights and question. While I completely agree with you that the patient voice needs much more prominence in medical education, I often wonder whether there are limitations to use of on-line resources to introduce this perspective. I truly believe that there is something fundamental and powerful about going to someone's home, getting to know them and listening to their stories of loss and struggle (and triumph). There is something very old and very human about sitting in the physical presence of the storyteller and bearing witness, not only to their oral history, but also to them as individuals--their non-verbal queues, gestures, and emotions. While words are powerful tools (as a former student of comparative literature, I'm acutely aware of this), there is something in personal interaction which, I believe, may enhance perspective-taking and empathy. In addition, the fact that the students get to know a specific individual and his/her family over the course of 1-2 years makes the interactions--and consequences--highly personal, individual, and contextualized within a specific place and time. As a result, their understanding of chronic illness is different than, and complementary to, that they acquire through formal biomedical readings and lectures. I recently published a paper on this specifically in reference to diabetes (attached).
I fully realize, however, that to do this as a required activity is prohibitive for many institutions--I was just discussing this the other day with my associate dean. At Michigan, the program has 340 students (170 per class), 170 volunteer families, 30 small group instructors and 30 small groups. The amount of time and cost this requires is mind-boggling--as well as being a bit of a burn-out (I've been doing this for 6 years and hit a wall of exhaustion last year; fortunately, got a "second wind" and have been going strong since then.
I don't, by ANY means, want to discourage you from pursuing on-line approaches. In fact, one of the volunteers in the FCE with recently diagnosed type 1 diabetes has his own on-line blog, and I've referred many of my patients to it. The address is http://www.diabetesselfmanagement.com/blog/Eric_Lagergren/. Words ARE powerful tools and should be used in the service of the patients and of justice. One thought: since storytelling can take the form of movies/songs/videos, the use of video interviews or monologues may be a great way to give presence to the patients' voice. As a matter of fact, I'm working on a video project right now with a delightful young woman with sickle cell disease with this approach in mind.
Hope that's at least a little helpful. I'd be delighted to continue this conversation. Please feel free to post this to your blog if you wish."



I am very grateful to Arno for taking the time to respond and I agree with him that the level of interaction achieved by actually sitting with a patient in their own space can not be replicated in any other way. This is intrinsic to our Family Case Study and we would not want it to be removed or downgraded in anyway.

But I do think that it may be possible to supplement these very meaningful interactions. In other parts of the course, for example when studying surgery or gynaecology, we could make use of existing patient accounts on the internet to increase the insights of students. When patients talk to each other online they may speak with a candour which they find harder to use with health professionals. These authentic accounts may be a greater assistance to students developing empathy than fictional narratives, no matter how creative or well articulated.

I agree with Arno, that audio and visual accounts could be particularly rich. In the next few years patients more patients may start documenting their illness journeys on YouTube. Of course these patients may not reflect the entire patient population. The digital divide may mean that the stories of empowered patients get much more airplay from students than those of their disadvantaged neighbours. We need to think of ways of redressing the balance, so that our students will be equipped to move forward in partnership with all their patients.

More networking options...

I am coming round to the idea that we need to leave as many traces as possible for people to find us. So to that end I want to mention a few of the places you can find the medical education community online at present. If you know more then please let me know:

First I found Deirdre Bonnycastle's Medical Education wiki.
And then the Medical Evolution NING.

By the end of October I was starting to use Twitter but I still had not made many medical educational contacts. Now there is a Twitter Medical Education Group which acts as a database.

In the meantime Natalie in Dundee started blogging too. We started discussing how we were using delicious and up came the diigo Medical Education group.

So where else might people be searching for a medical education community? Facebook was always a possibility so I have set up a group there too. And then I was reading about networking opportunities on AJ Cann's blog, and I thought that FriendFeed might be a good place to leave a trace as well. So I started a Medical Education room there too!

So that is a few bases covered. Where else do you think we should leave traces?

Medical Education on Diigo- more social bookmarking

After my last post, and some twitter discussion, Natalie and I decided that it was worth giving Diigo a go. It would allow us somewhere to form a medical education community, where we could have discussion, and talk to each other outside blogs. So here it is.

I'll be honest and say that as a social bookmarking tool I am finding it is taking me a little bit longer to find my way around. But it would be good if you check in and give us some feedback. We are living and learning!

Social bookmarking isn't quite social enough for me

I've had limited success in finding delicious doctors. Well, I might have found some and I don't know. I have certainly come across a few people who are very good at tagging sites relevant to me. But it is a little bit frustrating that I can not get in contact with these people, who are interested in the same things as me, to find out who they are and what they do. They might even be part of the elusive medical education community!

There is no way to directly contact another user in delicious if they do not have a website or email address listed. So I have to resort to other methods to make contact. I can join them to my network, send them a link and add a hello message to the note I tag, but I can't just send them a message.

Maybe there are good reasons for this. Maybe it prevents spam. But maybe it is just because delicious don't think it is very relevant. On their help page they state that your network might consist of "even new people you run across while exploring Delicious" so it doesn't seem to be considered a primary purpose of the site. Anyway, I have contacted them to find out and will let you know. I'll also tell you if anyone has responded to my strange hello notes!

The tag cloud of clinical uncertainty :-)

The tag cloud of clinical uncertainty is a graphical representation of the areas of medical research where we still don't have the answers that would help us day to day as practitioners. It is part of the new TripAnswers website, which takes a clinical question answering approach but allows comments from other users. At the moment the site does not seem to be fully functional, but I think it is a great idea.

And for some reason the Tag Cloud of Clinical Uncertainty makes me think of Bill Bailey. I hope that doesn't seem too irreverent ;-)

Patient narratives in medical education.... where are they?

Since my post about students learning from patient narratives in online forums I have been thinking a lot about how much emphasis we place on patient narratives in medical education.

When talking to individual patients we ask students to consider and explore the patient's experience of their illness along with the history of when symptoms developed and how they have responded to treatment. The exercise I blogged about asks students to compare the narratives of one family with that of others in the course and beyond.

But how often are the findings of qualitative research, which is in a sense about bringing together patient narratives, contributing to medical education? For example, there are several qualitative research studies (here and here for example) on heart failure finding that patients want to know more about prognosis from their physicians. But are we teaching students this? Does the Oxford Textbook of Clinical Medicine discuss the experience of being diagnosed with diabetes or heart failure? Well, I can't find it.

Is it time that we stopped seeing patient narratives as an add-on and started moving it to centre-stage in medical education?

Del.ic.ious doctors!

I've been using del.ic.ious now for a few weeks, but I have bookmarked very little that is relevant to my other life as a GP. By searching for tags such as appendicitis, bts (for british thoracic society), and rosuvastatin I am establishing that there are few tagging clinicians out there.

It may be hard to convince medical students that social bookmarking will be relevant to their lives unless there are a few examples of early adopter clinicians using it well.

Are there clinicians out there using social bookmarking? I'd be interested to find you. And if there aren't, why not?

Students learning from the patient's online voice

I've been thinking about how students can learn from accessing online communities which are publicly available.

I lead a project where students visit families who are hopefully in reasonably good health. The students are early in the course and we want their learning to be around individuals and families negotiating the choices (or lack of choice) they make with regards to their health and interaction with health services.

The assessment includes a 1500 word essay where they focus on a topic that particularly interested them when they were getting to know the families. The topics can be diverse as how social housing is managed in Cardiff, antenatal screening, or the impact of growing up in a multilingual environment. They are encouraged to compare the experience of the family to accounts in the literature, quantitative and qualitative, and to other families who are participating in the project who have had similar experiences. Students can ask their colleagues about the families they are visiting through a discussion board. As there are only 150 families in the project quite often students will come across issues which no other families have been through. I have suggested to students that they might look at publicly accessible community forums and see if the topics are being discussed there.

Since until this year the project only involved visiting families with new babies or young children, and young mothers can be quite active participants in forums such as mumsnet, babycentre and bounty, there has been lots of material for them to access if they wanted to. For example, last week a student said she wanted to explore cholestatis in pregnancy. I've searched and can't find any qualitative literature on the topic, but threads such as this on the bounty forum can give students many insights into how women perceive the investigation and management of the condition and the impact it has on their lives.

Students learn from the narratives of the patients they meet face-to-face in practice. This is central to medical education. It seems that there could be many valuable opportunities for students to learn from online patients as well.

What do you think? What problems could there be with this approach? What are the possibilities?

Gout.... what we don't know.

So, I'm exploring RSS feeds and today added BMJ's Clinical Evidence to my Google Reader. I've just got an update on gout. Unfortunately it seems that we really don't know very much about the treatment of gout. So how should I now treat gout? How does this summary help me?

What are the effects of treatments for acute gout?

Unknown effectiveness		Colchicine (oral) Corticosteroids Corticotropin (adrenocorticotrophic hormone) NSAIDs

What are the effects of treatments to prevent gout in people with prior acute episodes?

Unknown effectiveness		Advice to lose weight Advice to reduce alcohol intake Advice to reduce dietary intake of purines Colchicine for preventing recurrence Sulfinpyrazone Xanthine oxidase inhibitors