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Informed privacy decisions and informed openness

Posted on 14. Aug, 2010 by neilcrump in Communications, Health, People, Web 2.0

Ed Purkins wrote a blog post a few weeks ago that has had my mind whirling. The post read:

The author of a report which features the personal details of 100 million Facebook users says he released the information to highlight the privacy issues associated with social networking. This has received widespread media pick-up because it is captivating, and a classic attention-grabbing scare story. But it is not the massive scandal it might appear to be. People who don’t want to share their personal lives online don’t. And people who are happy to be open about their information online aren’t going to stop using social networks just because of this report. Facebook scare stories are nothing new (as we said in a post not long ago). So is this a complete red herring? Should we care in the field of healthcare communications?

It’s important to keep an eye on trends like this for sure. The number of people who have signed up to Foursquare, in which your online friends can track your actual geographic location, is high enough to suggest people don’t care too much about privacy.

There is nothing to suggest people are going to stop using social media because some long forgotten (but reassuring) concept of privacy will all of a sudden return. Fears are often quickly calmed when the ‘reasons for’ come in, and the bottom line is that if people see the benefits of these systems and genuinely want to use them they will be willing to take a little bit of risk. It’s likely we’ll see more educated users of social networks, but if people are willing to share with trusted parties where they are on a map, they are going to be willing to share sensitive healthcare information if approached in a professional, trustworthy manner and there are clear benefits to be gained.

The reason the Crump brain has let this post run along in the background is that I totally agree but also totally disagree with it! I left a comment on the Virgo blog for Ed but thought I would expand on my comment and explain myself a bit further…

Having a presence in the online world leaves a legacy and it means taking personal responsibility for your ‘brand’. I agree that the FB scare story was low to no impact, but I am pleased that FB, back in May this year, made setting personal privacy easier. Back then I wrote a brief blog about this topic and encouraged people to look in a rational way at how they set their privacy. On the FB front this is not simply a dichotomous ON or OFF decision, it is a sliding scale across a range of different parameters.

While the ultimate aim of being social should be transparency and openness, I don’t believe that the default setting for social media platforms should be fully open for all to see. The default should be informed consent that encourages transparency and openness, having been given clear information to help an individual consider the implications. I am not advocating the dreadful 30 pages of terms and conditions mumbo jumbo that legal departments (of iTunes et al) are so fond of, rather a few pointers to explain privacy (and the short and long terms implications), that encourages people to actively select the level of privacy they want for themselves.

There are massive benefits to engaging openly in social media, my life is genuinely enriched by it, I learn loads, meet interesting people, and have made some amazing new friends as a result.

On a personal front I have virtually everything about my life set to ‘access all areas’. Across all the social media platforms that I play in you can learn whatever you want about me, you can quickly find out the name of my cat, see the pictures of my civil partnership last August, check out my new Nike ID trainers, find out what car I drive, see what restaurants I have eaten in, see the crazy face I pull when I am our socialising and may have had a pint or two (or more!).  You can explore my political views, see what makes be furrow browed or makes me LOL. I blog professionally and personally, I love being open, honest and transparent. I have however made a conscious choice to have my life open for all to see.

Turning to health, there are clearly huge benefits when it comes to people sharing widely and openly about sensitive healthcare information. Sharing knowledge and the creation of communities around broad, as well as specific health issues, which provide support and advice, bring massive benefits, both life improving and life-extending ones. Again this should be encouraged and supported, but with the default being informed openness.

Communities like Patients Like Me are doing this well.  People share almost EVERYTHING about their health status but they choose whether they want anyone to see it (a casual visitor to the site) or only people in the community (members) to see it (and a range of other parameters in between).

Privacy is not a black and white issue, it just isn’t that simple, and we should not play into the polarised debate on privacy, but spread the word that privacy is about a range of choice.

This is important because the way people perceive social media privacy can make social media excluding.  Let me explain. A lot of my friends are not on Facebook, although one or two are just plain technophobes, many just don’t want to have people digging around in their private lives. So people need to know that privacy isn’t an ON or OFF thing – that they can participate, they can engage but in the way they want to. They have a choice, they have control.

What I am not advocating here is giving any of us, either on a personal or organisational level, an escape argument for no engagement, social media silence and worst of all half hearted attempts at social media where the engagement functionality is turned off (arrggghhhh!). The benefits of openness and engaging online are too important.

I do however believe that there is a responsibility of people that create social media platforms, especially ones that become dominant, to help people understand the information legacy that they are creating.

Let’s embrace the health conversation and mobilise people to participate, doing this in a way that encourages openness by educating people about their online legacy and making informed privacy decisions. Informed openness is the way forward.

So what do you think? Would the broadening of the privacy discussion encourage more people to engage?

Tags: FaceBook, informed openess, Social media