Thursday, 4 December 2008

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?


  1. I think it's a great idea. How would you manage the consent aspects of things eg would the students tell the forum they were lurking and going to use the material from the forum? How do you think the forum would feel about that? Would the students join the forum? I'll be interested to see what others think?

  2. Hello Sarah
    I think this is a very important point. I have always emphasised to students that they should only use publicly available sites which do not require registration. For one thing I encourage them to reference postings and if they are not in the public domain then that is not possible. These forums are public partly so that people can learn from them without joining or logging in. I'm not sure if the organisers envisage that the people learning may be students.

    I think that there are many more issues about joining password protected forums. It would be unethical to do that without declaring that one was a student(or a practicing professional). And I don't think that it would be good practice to join even that interest is declared. If a community wants to maintain a private community that should be respected. Students or professionals could upset delicate balances.
    But I do think that we should be harnassing the knowing that health 2.0 communities have. I'm just not so sure how to go about it!

  3. I guess you can't do much more than what you've described. But as you said on Twitter, you'd want to move the students from passive to more active networking. I haven't seen this discussed in blogs at all, so let me know what conclusion you come up with.

  4. You say "there could be many valuable opportunities for students to learn from the patients online"

    It could be difficult for the students to follow the patients they're dealing with in a face-to-face setting online. The patients may or may not be willing to share the services which they engage with & their usernames (it's a bit of an usual situation).

    If you're talking about your students using forums, etc. to gain a narrative understanding of the issues which are faced by people in similar situations to their family, then I think this is a great idea.

  5. Hello David
    Thanks for helping me to understand how my post might have been difficult to follow, above and beyond the spelling errors!

    I did indeed mean narrative understandings of others, rather than following the families visited online.

    Sarah mentions my twitter post about this being a passive way of using these forums. I actually think that might be a benefit! We medics need as many opportunities as possible to hear patient narratives in an unadulterated state. When our presence is made obvious then everything changes.

    I am still thinking about this a lot and will write more soon but thank you very much for your feedback.

  6. We must be reading each other's minds because I have just written a follow up to this post. I am thinking that the networking the students do should be more active. But I hadn't thought about your point about the unadultered opinions of health consumers.

    A colleaggue of mine had an open nutirtion course which attracted health consumers. They all had a blast and really learned from each other in their discussions. Would this be one way to go?

  7. "Sarah mentions my twitter post about this being a passive way of using these forums. I actually think that might be a benefit! We medics need as many opportunities as possible to hear patient narratives in an unadulterated state. When our presence is made obvious then everything changes."
    I am the "owner" if you like of a diabetic forum - well, I own the domain name though in fact I think of the forum as belonging to the members. On the whole I am more than happy to have medical students looking in. In fact I think it could be of positive use to them since a lot of the medical profession seem to wish to treat us (diabetics that is) as someone to control as opposed to treating us as partners in the treatment of our condition. I hasten to add that this runs against the grain of the National Framework for Diabetes.

    I digress.... the point I am trying to make is that it would be very nice sometimes for the medical profession to see us "in the raw". We have members with degree level knowledge of diabetes, we have the members with "A level" passes and every gamut down to the newly diagnosed who are struggling badly because of supercilious health care professionals who would prefer their patients took no active interest in their condition.

    So yes... bring it on... learn what it's really like before qualifying. In my personal opinion it can only lead to better, more compassionate doctors for our future.

  8. The passive vs. active voice is an interesting issue. I belong to a rural medicine listserve because I wanted to learn more about the issues faced by rural docs through their own voices. I rarely participate beyond sharing an article once in a blue moon ...but I have learned a lot.

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