As debates on the ethics, dynamics and even legal repercussions of online patient narratives become more prevalent, this international, interdisciplinary conference at Queen’s University Belfast, hosted by the Health Humanities Project Research Group at the QUB Institute for Collaborative Research in the Humanities, will focus on how those with life-threatening or incurable illness use social media, as well as the medical, ethical and potential legal consequences of online accounts of pain, suffering and the clinical experience.
The provisional programme is now available and registration is open – click here for details.
QUB epatients Conference 
if i am am above ground …this sounds very interesting.
H
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This does sound interesting though I think the term “incurable” is a place “well” people should not be assessing from their healthy safety. Incurable collapses the meaning of good intentions and the modern concept that all is fixable. It takes a different sensibility to find purpose here and of course no one wants to study residing with the end–the outcome is so unpromising.
The system that cares for me disallows involvement. The person I (still) am lives without history and is learning to detach emotionally from the patient model medicine has fitted me for. I blog to stay watching even if my presence is fading.
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Having cared for my chronically ill and disabled wife for over two decades I have been shocked at how the narrative is controlled by powerful vested interests, especially through outfits like the Science Media Centre.
Deliberate misinformation, misinterpretation and misrepresentation surrounds my wife’s disease : Severe Myalgic Encephalomyelitis, forcing her and countless others to cope alone in horrendous suffering with no tests, no treatment, in an increasingly hostile welfare system.
We have made great use of the communication opportunities that the internet presents, to counteract the lies and convey the hidden truth, the shocking physical reality of Severe ME. Social Media and our own website are a lifeline to us, on many levels.
The real love, encouragement, tremendous bravery, overwhelming generosity that we have experienced, from people we will probably never meet, from all the over world, leaves me breathless at times, it is so powerful.
At the same time, through Social Media and the Web we are able to get our message out, spurred on by other’s suffering and solidarity we take a stand as best we can : in the face of almost overwhelming odds.
With few resources but with truth firmly on our side we are actually winning the mother of all David and Goliath battles ! That keeps me going. I hope this event unearths extraordinary stories.
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Agree with Greg that social media is a lifeline. The world of being ill is no longer represented by the hugely expensive structure misnamed Healthcare. Like all things organized to elaborate “missions of service,” it serves only itself. As it “learns” it creates convenient, self-supporting assumptions and confines evidence of failure to the category of misguided complaint–either as being unscientific or malicious.
This realization finally came the other day when I was called for the third time from the Cancer Institute to ask if I’d had a necessary exam directed by them to my doctor and then on to the examiner with return results to be directed bask to the Institute. Recognizing this pattern as typical of almost ALL infrequent encounters with my ethereal care system, I tracked the message from doctor across the usual wrong places things like this are sent.
This technique is generally fairly simple. I live in a smallish town thickly dotted with smallish empires and found the letter imprisoned by the unwillingness of the local emergency room empress to forward or in any way respond to a message that might be slightly off target. In this case the term “urgent” was left off the letter which paced it in a dead file–the empress being too busy.
So I did her job and contacted the exam doctor whose receptionist gave me permission to request an exam. So all is well and I’m only 4 months late on my yearly exam. The only glitch has been telling my oncologist’s receptionist to note the exam date on her chart. Since I’m not allowed to act on my own behalf, the exam booking has to be credited to someone in the system so when the chart keeper called me I just gave the exam date. She isn’t allowed to believe or even remember that patients are required to take care of themselves. That would spoil their whole world.
This is going to be the major roadblock to change. Though the patients know the system doesn’t work and have constructed an alternative care system through social media, the people who run the system are welded to their chairs and will not be dislodged. They HAVE to believe the system works or all that education and self-regard would amount to nothing. Plus, the social media alternate medical world proves that patients are more than willing to participate actively in their own health….
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When I told some of my clinicians that I was blogging my ‘patient narrative’ I was threatened with legal action if I wrote anything they considered to be derogatory about them. As I don’t much relish the thought of dealing with legal action on top of being unwell I requested that they should read the blogs before they went to press, to protect me from this. IE I was willing to edit the blogs if they considered that parts of them were derogatory, to avoid a law suit. My request was denied.
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Polly, shame that your clinicians want to control the conversation around your care. To me this indicates not only a devaluation of you as a person but an indication of how their needs as career clinicians cancel-out their claim to concern over how their patients are experiencing treatments. Hard to imagine these medical people as either scientists or humanitarians. Last I heard, “looking for a cure” didn’t include attempts to discredit people’s reactions.
Sorry this extra stress has been put on you.
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Polly, should also that doctors where I am in Alberta, Canada have all sorts of rules around electronic communication. Patients are not allowed to communicate by email, only by a relay system through their family doctor. The reason given? Regular email isn’t “secure” so living at a distance, I have to wait often for months until my doctor’s assistant feels like passing messages onto me.
The real reason is to protect the doctors. Things I’ve been told in the privacy of medical offices are as slanderous of me as I’m tempted to be of them. Ultimately though, emails and blogs encourage people to resolve problems on their own and that’s very threatening to the story of the helpless patient and the all-knowing doctor. I understand my view is distorted by bias but since I can’t get service that actually works, there’s no choice other than to do it myself.
When a system stops working, it’s rare that the solutions emerge from the system itself. Think that’s what is happening here.
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