I logged into my social media platform this morning, generating a few more bytes of data for the aggregate pile, and the first three posts followed:
1 – A link to an interview with Mark Andrejevic (great scholar who I seem to reference in most things I ever write about) in which he discusses the consumption of social media as both experimental and exploitative – and primarily about the aggregation of data for big companies:
“because our individual data and information on its own is not particularly valuable. When it becomes valuable is when it’s aggregated, and we’re not in any bargaining position to command some piece of the pie when it comes to the aggregate use of that data. …”
2 – A link to an article by University of Washington scholar Brittany Fiore-Silfvast discussing data collection and 23andMe in relation to the FDA’s warning letter to the company in which she writes:
“Across many of our interviews with physicians it became clear that data were not always considered the valuable resources that advocates for big data in health claim them to be. Patient data generated outside the clinic often required extra interpretive and managerial work, and created more liability and risk for physicians, without providing much more clinical actionability. One physician reflected that the most challenging parts of patients bringing in 23andme data was having to engage in a conversation teaching the basics of statistics and discussing the nature of the data itself, much less make sense of that data in medical and clinical terms. Mostly physicians don’t know what to do with the data or what they mean clinically at this point” http://ethnographymatters.net/2014/02/17/ethnography-in-communities-of-big-data-contested-expectations-for-data-in-the-23andme-and-fda-controversy/
One of the main points for me here is that collecting data also creates new work and places new demands on people – and when it comes to medical data – patients and clinicians alike are sometimes disadvantaged and overwhelmed by the demand that we all access genomic data despite the fact that it has very little link to meaningful or useful information even if you happen to be a geneticist. However, the very fact that it is generated makes people think they have to take it on board and learn how to understand it.
3 – A link to a new consumer device for generating data – the ‘Mother’ motion sensor package for the home – especially so you can monitor your child’s toothbrushing activity remotely: https://sen.se/store/mother/
Having witnessed my daughter aged 6 standing in the bathroom with the electric tooth brush turned on but using it to wave in the air and choreograph unknown dance tunes while I thought she was brushing her teeth – I can tell you that motion is no indication of dental hygiene – but hey ho – don’t let that stop the marketing of a new downright sexist new data gadget that sells data consumption back to the consumers who generate the data.
It was the mother motion sensors that really brought these things round in a nice loop for me this morning. Data, data everywhere – we are all in the business of generating and buying it – at the same time that significantly large corporations (Google anyone), are also selling it. So data (and it means different things depending on who is using the term) is a commodity, everyone is generating it. One concern (Andrejevic’s) is that people are generating it, corporations are making a new economy out of it, so that is exploitation. Another concern is that not only are people generating data for companies to make money out of – one of the ways it is being sold back to us is through devices that generate new data – so not only are people being exploited through data mining (e.g. Facebook), they are paying money to buy devices to generate more data through nice little sports wear gadgets like FitBit (what could be wrong with that), and now Mother (what could be right with that). Also at stake is that all the data generating companies are trying to make all this data meaningful – and they have worked out that consumers can do that bit for them too – Mother Sen.se, FitBit and Facebook offer answers to that – people get to care about the data by relating it to our selves, other people, family friends, political situations and that is how people make data meaningful – we get to care about it.
Andrejevic and Fiore-Silfvast are right, data is what the digital economy is about, it is everywhere – from medical health to social networking sites – and just about everywhere else unless you are offline, out of wireless network range and not consuming anything. At the same time no one really knows what the data means – but that doesn’t matter – it is just the fact of producing it that generates lots of money and the construction of a whole new social infrastructure. But unlike the data generation which is fairly evenly distributed – the money doesn’t get back to many people – and the meaning – which might help with healthcare if it ever materialized seems to have dropped out of the equation except as a matter of personal interpretation.
In the UK context I would be a little wary of Genomics England’s claim that they will generate better heath care, clinical insights and wealth and health for the nation by sequencing 100, 000 genomes with £100 million from the Department of Heath. Surely what this will generate is lots of data. Mother Sen.se asks me ‘What do you care about today?’ Right now I feel like I do care about data – but not in a good way.
Biodigital Life 