Dear Nadia, thank you. I promptly shared this on my networks a few days ago.
The overwhelming emphasis on the technological future of technology in healthcare is, most interestingly, not originated by the community of care-givers or patients at large.
It is also worth noting that the discourse has very different tones when it comes from “futurist”/technologists (commodification, patient-as-a-customer, patient-centric-innovation, disruption-of-healthcare,…) than when it is sung by caregivers, including but not restricted to doctors, and patients (empowerment, functional hacks, cooperation/sharing, personalisation, …).
Unfortunately, most patients and caregivers are too busy to really let themselves be involved in this, and most policies and political discourses are steered by the wrong bandwagon. I believe this is an issue well known to anyone familial with the ways of lobbying…
That is how shareable and ouishare started to build momentum around the collaborative/sharing economy conversation. They would basically meet people doing interesting or relevant work and write a case study. One example to refer to is the one written by Ben Vickers about the urban Shepherd of Stockholm.
I asked Neal Gorenflo about how long it took Shareable to get momentum (80k unique visitors per month)). Apparently we would need to find resources to pay a good editor, people contributing articles and a social media editor, for 3 years to really get it going.
Why not. I always thought a communication channel would not be enough, as it would still attract the outliers who have time or the will to make time to press on the issue…
However, if we are thinking of a more proactive journalism style, that might give a hand.
An interesting challenge here, is that of generating an identity for a group that is delocalised, very diverse, and sometimes at odds (what works well somewhere for a group of patients, may be even detrimental elsewhere or to a different group)…
It is like protecting the environment, trying not to offer excess opportunities to a niche of the ecosystems over the others… But we might look for solutions along the way.