So, I’ve spent my first afternoon at the Salzburg Global Seminar Session 553, at the beautiful Schloss Leopoldskron just outside Salzburg, Austria. In addition to listening to some interesting discussions and meeting a lot of amazing people, I have a head full of thoughts that I need to express.
My first thoughts after today’s discussion move around knowledge and respect – topics that was brought up repeatedly today.
With my health informatics students I talk about this a lot. They come from different backgrounds, some are clinicians (nurses, physicians, physiotherapists etc) and some have a technical background (IT-developers, designers, engineers), some have patient experience, others don’t. In addition, they come from all over the world. In the program, they get to work together from day 1 on different group work projects to explore problems and needs, design solutions and evaluate them. I try to imprint in the importance of recognizing the limits of their own knowledge and expertise, recognizing the importance of other peoples knowledge and expertise and staying curious at finding out what they do not know and learning to collaborate with those that possess the knowledge they lack.
Today we talked a lot about how patients have knowledge and expertise that healthcare professionals do not have, and how important it is for healthcare professionals to acknowledge this. Yet, I have a feeling that many still considered the knowledge possessed by healthcare professionals to be more or less unattainable by patients.
I’m certain we will continue to discuss this over the upcoming days, but I would like to state that sometimes patients or family carers know just as much or even more about an illness and it’s treatments than the healthcare professional they are facing. But this is where it often goes wrong – this is where problems arise. It is very clearly presented in the excellent publication by Rosamund Snow et al: What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study
“Participants emerged from the course with greater condition-specific knowledge than many of the healthcare professionals they encountered. When these professionals did not understand what their patients were trying to do and were uncomfortable trusting their expertise, there could be serious consequences for these patients’ ability to continue effective self-management.”
“Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions, and expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field. Although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well meaning, blocks access to medication and supplies needed to manage chronic diseases successfully.” 
As long as patients stick to knowing their own “patient experience type knowledge”, it’s ok – but if you suggest that you know more about the diagnosis and/or treatment than the professionals – then you question the power balance and hierarchy healthcare is built upon.
I am looking very much forward to continuing to discuss this over the next 5 days. Stay tuned for more!
 What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study
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