Tuesday, 20 January 2009

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?


  1. As someone involved in medical education and also as a patient (I had a renal Tx in 2006) I think that students reading patient blogs is probably quite a good idea.

    It could also be a good idea for Doctors to read sites of patients in the field in which they work. Although there may be issues of getting too personally involved if they read their own patients blogs. As a GP, you may be better answering that.

  2. I think reading patient's blog can give med students some idea about them coping with their ilness, especially psychiatry could benefit.
    See also this blogpost:
    Once had the idea of letting psychiatric residents fill a life chart for bipolar disorder when following the blog of a bipolar patient.
    Kind regards Dr Shock

  3. Medical students don't get exposed to enough patient's stories and technology is one way of providing access. I have read some extremely articulate and well researched patient blogs that have provided me insight into the day to day lives of people with chronic illness.

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  5. I think that reading patients' blogs should be used to supplement in-person encounters, not replace them. Due to time constraints and other factors, patients will often reveal more in a blog than they would in person, and these insights could be quite revealing. As for in-person experiences, I really admire the medical schools that assign students to follow a family's health experiences throughout their time in medical school.
    As for Second Life, I don't think it would be a wise tool to use for taking patient histories. The learning curve is large, and adding technology to the taking of a patient history would be more of a burden than a benefit. Technology can build bridges or tear them down. In choosing whether to use it, one must determine which outcome would be the most likely. Second Life includes wonderful medical simulations and educational tools, and I think it would be good for medical students to learn to use it for the sake of seeing what it has to offer in these areas.

  6. Coventry University have recently used web cams to allow students to interact with patients in online conferencing. Although patients may have historically come in to help with student education this allows patients who may be unable/unwilling to travel to participate.

  7. Should have added as part of the Occupational Therapy undergrad programme!

  8. Blogs are a good way of voicing frustration at treatment or at the general world of your disease... is diabetes a disease or a condition? No matter, I find it hard that so many patients are not treated as anything other than dumb animals by the doctors who treat them for diabetes. Education is the key... and if they can express this frustration in a blog, surely this has to be a learning curve for the medical world?

  9. Get 'em to join in on forums... nothing like a little live interaction, in a setting where they have NO accrued status, to quickly learn what's important to people, and what's not.

  10. Thank you for all your wonderful comments.
    I look forward to discussing this more with you.
    Anne Marie

  11. Recommend that your medical students use the database of patient experience videos and interviews on http://www.healthtalkonline.org/

    Although individual patient blogs are interesting and useful they don't give a balanced representation of all types of patient experience for a particular condition.

    The reason that HealthTalkOnline is different is that they use research to try get the range of experiences - see http://www.healthtalkonline.org/Research

    best wishes

  12. Hi Annabel
    Yes, we do use Dipex/Healthtalkonline as a resource. It is interesting that as a blogger you are worried about blogs not being representative. Yes, they reflect the stories of more empowered and engaged patients. But they have skills and knowlege which we would hope many patients will develop if they don't have them already.
    I really like dipex but it is filtered. We are hearing the voice of patients but not directly. They are not in control of the medium.

    The voice of patients is getting stronger and we need to prepare students for listening and responding to it, rather than determining the agenda.

  13. Please check out the relevant forums such as diabetes-support.org.uk which give the whole spectrum of experience of diabetics for example... the forums give a cross section and the whole postcode lottery is woeful!

  14. Thanks Patti!
    I agree that patient forums give a fantastic spread of experience and opinion.

  15. As regards blogs or e-patients representing the most vocal section:

    I work with people who have complex communication needs and use AAC (augmentative and alternative communication). I would argue that web based media offer new ways for people without an automatic voice to express themselves and develop a narrative in ways that have not been possible before now. Also our service provides access methods to comupters and therefore often the internet to people with very complex physical disabilities who may often be restricted in their ability to partcipate in traditional patient involvement projects. Accessibility = greater potential to connect

  16. @buckeyebrit You are giving these patients the chance to become the most vocal. Great work.

    I don't think we can make any presumptions about who will or will not use these tools if we make sure they have the opportunities:)

  17. As a patient who blogs and also works to cultivate community amongst others who have the same disease and blog (multiple sclerosis), I think that it would be an excellent idea for med students to get to know (e)patients. However, I would not agree that interacting on a forum would provide the most balanced view of patient life.

    On a few occasions, I've received emails from folks who were interested in a particular topic and asked me to share my thoughts or experience. I'm often glad to do that.

    I also write on a health site which has a question/answer section. We received a question from a dental student who wanted to know what effects MS has on oral/dental health. That student received no responses.

  18. Thanks Anne Marie

    Agree that patient blogs are different to HealthTalkOnline in that they are not filtered.

    However, I didn't mean that patient blogs weren't balanced... I meant that that blogs don't represent all patient views.

    My understanding is that HealthTalkOnline use a social research technique called "maximum variation sampling" specifically to get as wide a range of views as possible... and that's a point of difference from individual blogs.

    I hope that makes sense.

    best wishes

  19. @Lisa Thank you so much for your comments. I have reservations about getting students to join forums because I think it can disrupt the dynamic. I am going to write more about this again and will be very interested to get more patient opinions.

    @Annabel Thanks for the clarification. You did confuse me when you said balanced.
    Of course we can't be sure that blogs/forums represent every experience. But when a student talks to patients in my practice in the South Wales valleys, their experience might be different to patients in the inner-city London. Web 2.0 can help increase the diversity of experience that students are exposed to.
    The digitsl divide does concern me but hopefully we will overcome it as time passes.

  20. *Great discussion.* Thanks, all.


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