Wk 3 Exploring the Big Bang Data Exhibition
The Big Bang Data exhibit ‘How can data improve our health?’ (Loder, 2016) on the subject of medical data, suggests ‘New research digitally enabled, patient led’ and that ‘new data is produced, owned and controlled by patients. So it will be accessed on their terms; as active participants rather than passive subjects.’ The view presented is of opportunities for advances in healthcare provided by types of data available from new sources. In addition to control and access, there is also suggestion of improvement in understanding of what the data means for an individual’s health status.
In ‘Who controls our data? Usman Haque debates the implications of the data explosion’. The focus encourages a critical view of motivations for data collection. Linking the two, could begin to consider issues in regard to health data. Historic usage of data from drug trials by drug companies in the development of treatments, which are then controlled by cost, has created inequalities. In terms of profit generated through use of personal data it is unlikely patients can have a clear understanding of this when signing consent forms. There is likely to be bias in terms of age, education and access to equipment.
Under the data and democracy theme ‘Florence Nightingale: A Data Pioneer How did Florence Nightingale use data to empower change?’ looks at how her recording and use of data was very significant in advances in medicine and healthcare. This was at a time when capitalism and commercialisation in control of data was in it’s early stages.
It would be interesting to consider whether there is potential for personal medical data to appear in ‘automated’ form and be manipulated through algorithm as described by Miller (2010). Drug companies who have access to data could potentially suggest treatment regimes generated impersonally and yet through an amalgamation of personal data.
The overall value of the exhibition is partly in providing examples of data collection which could lead to more informed choice in many social and political contexts, however this will still be dependant on technical knowledge and understanding.
References
Exhibits
Big Bang data 2015 Somerset House / An exhibition organised by Somerset House Trust, the Centre de Cultura Contemporània de Barcelona – CCCB and Fundación Telefónica
Available at:
http://bigbangdata.somersethouse.org.uk/
Accessed 20.2 .16
Loder, J. How can data improve our health? (2016)
NESTA
Available at:
http://bigbangdata.somersethouse.org.uk/how-can-data-improve-our-health/
Accessed 20.2.16
Florence Nightingale: A data pioneer (2016)
Available at:
http://bigbangdata.somersethouse.org.uk/florence-nightingale-a-data-pioneer/
Accessed 20.2.16
Who controls our data? Usman Haque debates the implications of the data explosion (2016)
Available at:
http://bigbangdata.somersethouse.org.uk/who-controls-our-data-usman-haque-debates-the-implications-of-the-data-explosion/
Accessed 20.2.16
Miller, V. (2011) Understanding Digital Culture. In: Miller, V. Key Elements of Digital Media. Sage: pp 12-21.2012