We may live in a digital age, but our personal preferences for how we publicly or privately share our data are analogical. That is to say: between Private and Public, there is a spectrum of choices we can make in selecting what parts of ourselves we want to be private or public.
One patient may willingly choose to put all of her health data completely in public social platforms; another may choose to share only selected data; and another may choose to publish no data online.
But there’s another aspect to the choices we make about our online behaviors: our level of awareness of what truly happens to our data and ourselves as we share data and stories online. The more aware and informed we are, the more likely we are to make choices we won’t regret.
The Web rarely forgets, while we may forget what data we once shared or where we shared it; as a consequence, the decisions we make about our revelations may not fully take account of the full story.
So we have two variables to consider with respect to our online behavior. Here’s a visual:
Different people have different levels of willingness to share and of awareness of what happens as they share.
Just as we have fully informed consent or refusal for procedures, entities which choose to get involved with consumers will need to consider what responsibility they have in ensuring that participants are as fully informed and aware as possible of the consequences of their online behavior.
But the public social media we have today are not ideal. They were not designed, nor intended, to handle the subtle nuances of Healthcare information exchange, patient-provider collaboration or therapeutic communication.
That doesn’t mean that they can’t be re-purposed and used for public interactions in a healthcare context.
It does mean that healthcare providers need to fully understand the challenges of “doing” health care online.
It means we need a new generation of software that makes it much easier to assess consumers’ levels of willingness to share data and their awareness of the consequences of their public (or private) sharing.
Knowledge, not fear, should guide how Healthcare faces the fact of today’s communication realities – no matter how hard or frightening or unchartered.
So what do you think? What kinds of responsibilities do providers and entities have to fully inform consumers about the nature of a Web that never forgets?