Issues of Privacy Online
I have joined a private group on Facebook. You cannot find it through the Facebook search facility or via Google. You cannot see if your friends are members of private groups. This is the info from Facebook about the different types of privacy for groups:
Online privacy – or lack of it – has of course been a hot topic over the years and Facebook in particular has been held up as a major offender for the invasion of private information and selling it on. Despite offering services free of charge, Facebook has made a lot of money from selling our information. But now we all know about it, maybe we should just act responsibly and not say too much online that we don’t want shared:
Private Facebook Groups
The group I have joined is for ‘ME Mums’ . I was told about the group through another support forum for carers of people with ME and it was only via invitation that I could have joined – being linked to the group by an existing member. The group allows us to talk privately – sharing information and grievances. We also have some laughs.
Community / Grassroots level Expertise
The group has been a source of a great deal of valuable info that I would otherwise not be able to find out – in fact having a daughter who has had ME for 15 years, I have gained more info in the last month or so than I managed to collate on my own over those years. Expertise is of the kind Gee writes about when he describes Affinity Spaces. Expertise that is valued is the ability to behave like a hunter gatherer, bringing jewels to the nest from other parts of the Internet. Hyperlinks are common on the ME Mums space – reaching out to other support groups; marginal medical research; useful gadgets to buy – eg heart rate monitors being a popular one at the moment – ; ‘good people’ we can trust; videos on YouTube and to other ME organisations across the world.
The group has no official ‘certificated’ experts – no medical doctors and the like. Respect is earned through online reputation within the group – and the greatest gurus are highly valued and receive lots of ‘likes’ and affirmative remarks on their posts. They post daily, lengthily and bring lots of information. Furthermore, such gurus mediate the info – explaining its relevance to others in simple language. Other members refer to such posts and to the documents the gurus share. Other ways of acquiring respect is via the amount of support you offer; a sharing approach is universally expressed and no negative judgements are ever articulated. the ‘like’ button is used liberally – and with multiple meanings.
We have created – and continue to create – an archive of symptoms, of bad experiences and of good, that could be the basis of some good research.
Risks – Breaches of Confidentiality
This online space of which I am a member will not become the focus of my own research; this would not be ethical and would jeopardise other types of benefit I get from the group anyhow. But I am learning things from being a part of this new type of online space – which I think has real dangers as well as benefits. Because whilst we may all keep everything secret – there is no guarantee of this, we hope to trust members, but who knows? Also, maybe at some point someone will hack in – and maybe Facebook will decide to make our info available to a third party. We always have to be on our guard. Not just because there is information we are sharing about our children online – which they may not wish to share and which is confidential; but also because we are sometimes specific about professionals we criticise (perjury? slander?) but also because at this stage, children are still taken into care when they have ME – on the pretext of Munchhausen syndrome by proxy. We only have to think about politicians’ leaked emails to get a clue about the damage seemingly innocuous digital texts can do sometime.
The downside of user driven expertise
On the downside, I see some people getting in a big state over the information they are given and I have seen how they can easily end up worrying too much. The problem with people researching for themselves is that they are so close to the situation – and while this has absolute advantages (insider knowledge etc) sometimes distance is necessary for perspective. This kind of grassroots level research is a great thing but at the same time I keep thinking that it would be good if this were not necessary – that if medics and social services etc co-ordinated themselves as well as we have, we would be able to trust them to care for our children as well as they care for heart patients etc. People with orthodox carefully diagnosed illnesses get better help. Traditional experts – medics in particular – have power and also access to privileged information and funding for treatments and support and research. If they could only see our conversations sometimes, it would make them very angry; but after the anger they may learn something very valuable.
Educational application of private groups
In terms of education … I did not realise exactly how private you can make a Facebook group and so this does have some useful affordances for teaching and learning – will muse on this at a later date. I like the idea of creating a Facebook space for students now that I realise I can reassure them their friends will not see the group and it will not interfere with their existing presentations of self online!! And as I have seen, when the motivation is there, the group can work very impressively. This is what online participation is all about.