Few things have disrupted the status quo more than the internet and social media in particular.
As a long term patient whose long term condition carried with it consequences of isolation and deprivation from participation in society it has been life changing.
Social media has contributed hugely to this through the contact it enables me to have with others with both professional and lived expertise and insight. It has been at times a source of support in the absence of services able to respond to me when in crisis. It has also given me a platform from which to be heard and allowed me to break through boundaries usually preventing someone with no legitimacy in the official hierarchy from being admitted to “professional” conversations.
There is a growing community of patient change agents out there using the internet as a tool. These E-patients are described by the late Tom Ferguson founder of the e-Patients Scholars Working Group as “empowered, engaged, equipped and enabled”, a far cry from the passive recipient of old. E-patient Dave is a leading example. David DeBronkart is a cancer survivor and other of the book “Let Patients Help”. In this article written on the occasion of his admittance to the Healthcare Internet Hall of Fame, he describes the extent to which the internet has transformed healthcare providing a useful timeline and links to sources of further reading.
To those still resistant to the change in patient/professional dynamics this indicates the genie is clearly out of the bottle so why not join in?