Tuesday, 23 December 2008

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.


  1. You might want to look at the following site from the University at Albany's School of Public Health. While it is not geared towards med school students, it might give you a model for online learning.

    I also have had students at New York state Medical colleges and specialty medical professions (chiropractic, radiology, and pharmacy). They all are currently working on trying to integrate cases in which patient information is presented in using new technologies to prepare students outside of class for in-class presentations. I could see the creation of video narratives as a preparation activity for a large lecture.

  2. Hi Anne Marie, tomorrow I will be giving a lecture about understanding chronic pain while working with people in return to work. I wanted to capture the patient narrative and a colleague pointed me towards a wonderful UK website called Health Talk Online http://www.healthtalkonline.org/ The information and stories are very helpful in illustrating the power of narrative in helping others understand and as a component part of pain management! I recommend this site highly :-)
    Cheers, Anita.

  3. Hi Anita,
    Health talk online, formerly dipex, is a great site. There was some discussion of it in the comments of one of my previous posts on narratives. It is organized rather than self-organising, like discussion forums, but that may be a strength.
    Thank you for reading.

  4. I work in an electronic assistive technology service and conduct assessments to enable patients to get online, many of whom go on to be high intensity users of the internet. The progress being made in access methods means the even patients with very complex physical disabilities are able to engage with their wider community through web based media. This in turns means that they are able to contribute to the existing body of self reported information. Very exciting stuff!

  5. @buckeyebrit

    Thanks for your comment. This is an area that really interests me!


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