In our latest blog on interoperability, we take a slightly different path, more specifically down a yellow brick road. We explore interoperability in the light of the paternal view and how it effects patients.
The Total Wizard of Oz
In a vast expansive emerald hall that appears to go on for miles…
Knees trembling, teeth chattering overcome with fear our intrepid heroes and heroine approach the Great and Powerful Wizard of Oz…
“I’m Dorothy and I’m here to ask for greater health and social care integration so my Auntie Em can receive the holistic care she deserves!”
“But Dorothy, maybe it’s because I have no brain but isn’t interoperability too difficult to achieve because clinical care and I.T systems are both too complex?”
“What I want more than anything is for people to have access to their data so they can be partners in their own care. That would be better than a heart.”
“I-I-I wish I had the courage to ask EPR vendors about how they can keep patient data secure and still allow access on multiple systems.”
The Wizard Booms! “GO HOME! STOP WASTING MY TIME! Pay no attention to the man behind the curtain.”
Toto becomes frustrated at the time and resources they’ve wasted on their interoperability quest, so he jumps out of his basket and pulls back the curtain with his teeth to reveal the man behind the curtain.
Faced with undeniable evidence of courage and heart, the Wizard realises the error of his ways and reconsiders the status quo with EPR vendors. He decreed that they must adhere to open standards for Health & Social Care with immediate effect.
Medical Paternalism
This light-hearted blog reveals beneath the surface a deeper more serious issue – Medical Paternalism, a term used to describe the philosophy that certain health decisions (e.g. stigmatised diagnoses, complex evasive treatments for terminally ill patients) are best left in the hands of those providing healthcare, (Medical dictionary).
Within the context of the blog the wizard represents the authority tasked to ensuring EPR systems deliver on Interoperability. So, is the wizard a charlatan or a saviour? Or simply a bad enforcer? I tend to agree with the latter, however this is not for debate here. I believe, Paternalism is the major factor preventing the free flowing of structured patient information across different systems.
Doctors as a rite of passage swear to uphold the Hippocratic oath – which serves as an ethical guideline honouring Hippocrates the Greek physician born around 460BC and founder of modern day medicine. One of its most famous pledges is to, “do no harm” coupled with the outdated view that the patient would not know how to interpret their own health information without going through the same academic and practical rigour has been challenged.
Thousands of patients across the globe are crying out for access to their data to enable information parity where they can do their own research for treatments – redefining the doctor vs patient relationship, as illuminated by Eric Topol in his book, “The Patient shall see you now” and echoed by Bob Wachter in ‘The Digital Doctor’.
A similar paternalistic view has been assumed by EPR vendors, their protectiveness of the information held in their system has not enabled patients to access their information without first navigating a mine field of information bureaucracy. Without real competition, innovation is stifled and costs remain high.
An unknown patient quoted, “What use is having access to our data if we cannot add to it or have our views/concerns inform the care we receive?”
Their party software vendors are equally challenged by the high walled, barbed wire accreditation processes erected by EPR vendors; serving to keep out the competition and solidify their market share at the expense of introducing new solutions that would significantly improve the health outcomes of citizens.
These walls are slowly crumbling, brick by brick helped by National drivers such as the NHS Five Year Forward View and Sustainability Transformation Plans heralding the polar shift from Medical Paternalism to ‘The Democratization of Healthcare’ that re-addresses the power balance between health care professionals, patients and carers. To improve better health outcomes for all.
