If there was a single drug as powerful as the internet we'd be prescribing it to every patient.
Of course the internet itself isn't a single drug, or single treatment. On Twitter, the Type-1 diabetes community taught me how to carb count to adjust my insulin doses, provided me with the algorithm for making it through my first middle-of-the-night-ketones experience, and is always there to talk me back on to the diabetes horse when I have decision fatigue or burnout.
I belong to a closed forum for people with Addison's disease - a rare, unstable condition that means my adrenal glands have given up - and a Facebook group for people with parathyroid failure, which causes calcium dysregulation. In short, my body has lost its magical powers of homeostasis, and so every day is a series of tasks and puzzles to prevent it from descending into chaos.
To ward off potential disaster, I use a sports watch and an activity tracker with a heart rate monitor to monitor my health and spot patterns that can forewarn of incoming crises that might otherwise land me in hospital. My daily experience of juggling and herding my health is one of co-operation, integration and collaboration, via technology and the internet. Apart, of course, from when I interact with the official deliverers of my 'care', the NHS and health care professionals.
Over the four years since I became ill, more than a dozen different specialised departments have been involved in my care.
They don't pretend to operate as a team - they shrug and sigh about the difficulties of silo medicine, and smile ruefully at my hints that maybe we could organise some kind of multidisciplinary team and stop pretending that my organs are bagged up for individual sale at the butchers. Sharing information? Viewing test results from a different hospital? Where are those flying pigs?
But my doctors and nurses, especially my specialist nurses who are the backstop for daily support questions, are already part of a multidisciplinary team - a huge network of people who provide health support for me and thousands of others like me, on Twitter, Facebook, Strava, and specialist forums. The healthcare professionals I deal with are particularly privileged nodes in the network; they are the gatekeepers for tests and treatments. But they are too often disconnected and difficult to communicate with, and some lack lived experience.
When I was first diagnosed, my specialist nurses were the sources of wisdom. They helped me to see that life could go on, albeit differently, through precious, practical advice based on a combination of lived experience of the patients they helped and official training and evidence sources. They built that resource up through years of patients coming to them with questions, working out the solutions together. But I no longer take my questions to my nurses, because accessing them is so much more difficult than reaching out online. I can't email most of my healthcare professionals, which means that even if I can reach them via voicemail tennis, I can't share links or photos or data easily.
If patients and healthcare providers are truly meant to be collaborating, why don't we use the same channels of collaboration that we use in professional collaboration? Can you imagine a colleague saying to you that they don't have an email? That there is no way for you to send them a link to a document?
Many professionals fear a tsunami of demands for responses from patients if they make contact and collaboration easier than the obstacle course that it currently is. They worry about information overload and the potential for liability if time-critical requests for help are missed. Interestingly, they don't usually seem to worry about the same acute patient sitting at home waiting for a response to a voicemail.
Fortunately, we are already out there. We are supporting each other; we are forming our own teams, sharing good quality evidence and living better lives.
Five years ago I would have said that every nurse needed to become an e-nurse because of the benefits to patients. Today I believe the opposite - we are not waiting, we have redefined the power groups, and patient networks are increasingly the 'inside', with healthcare providers sitting outside, unaware of advances and how patients are actually managing their health.
You need to join us here in 2017, via email and forums, via Twitter and Facebook groups, because we are not just recipients of care, we are a resource that matters.