Tag Archives: health

Dementia is one high-profile policy area where this has been put into practice. Social media has helped the department take engagement beyond “the ‘usual suspects’ who sit on expert groups,” according to Anna Hepburn, digital lead for the dementia campaign, to reach “people with day-to-day experience of living, caring or working with dementia.” Engaging with networks such as the #dementiachallengers hashtag group helped ensure that the voices of those living with dementia were centre-stage at the UK-hosted G8 dementia summit that took place in December. Planned, in Hepburn’s words, as “a truly digital summit … open to anyone with internet access,” the event was livestreamed to a global audience on the department’s Dementia Challenge website, which also hosted a live blog, a Flickr stream, highlights from the tweet stream surrounding the event and several moving videos by people with dementia and their carers.

We’re soon to release the policy report mentioned in this excellent post by my old friend and former colleague Sam Gregory, and as part of the general digging around for the report, I came across this elegant run-down of the interactions between information technologies and privacy, seen from a human rights perspective.  I hope our report and thinking comes out as taut and informative:

Information technologies both extend and diminish personal control over the boundaries of the private. They extend privacy because they offer new means to set personal boundaries, to alter and project identity, and to participate and associate in the public sphere. Mobile phones and cameras, internet commerce, and social websites all harness and organise data to these ends. Data is likewise gathered in health databases to extend lifespan and manage disease, to monitor and enforce personal security, and so on. All these innovations can bolster the capacity of individuals to act autonomously.

On the other hand, technological advance challenges personal autonomy, traditionally understood. Private individuals neither manage nor own the technologies they increasingly depend upon. Personal privacy is (or is experienced as) threatened in four ways. First, the architecture of data and communications systems categorizes individuals and their attributes in novel and predetermined ways, for functional purposes that refashion personal profiles along terms created and administered by third parties. Second, the systems are now so advanced and complex that modern users do not and cannot expect to comprehend their functioning and adjustment, the amount and kind of data collected, who has access to it, and how access and usage is governed, if at all. Third, the IT revolution has been accompanied by a transfer of the management of public infrastructures into private hands. Whereas individuals previously entrusted the policing of their private spheres to public actors (the police, post and telecommunications services, public health services and so on), albeit guardedly, today it is not clear whether individuals expect the private sector to defend the security of their personal information from the state, or, conversely, expect the state to protect them from private abuses. Fourth, ordinary safeguards of the kind traditionally used to monitor governments tend to fail in a world where data flows barely recognise national jurisdictions.

(I also posted this a while back over on my web-foragings blog.)