PhD: Data coordination and boundary spanning across interdependent boundaries
Is health data the new oil?
The mining and analysis of health data is the subject of large investments in industry and research. The arguments behind this are focussed on improving health care systems. These arguments are normally three-fold:
-
Access to health data will enable and foster innovation in health care.
-
Collecting, archiving and studying data will enable more effective health care. Claims of effectiveness are typically to save costs and public spending for health care, while at the same time improving the treatment regimes and their outcomes.
-
Granting access to health data is envisioned to not only save costs but create monetary returns for public health and, in some cases, even individuals.
The centre-point for these attempts is to create legal ways for data access. This research seeks to understand the political economy of health data in contemporary Britain, within the context of the Connected Health Cities (CHC) programme, which built infrastructure (Data Arks) to house and analyse data.
It specifically concerns emergent regimes of data access. These regimes are operating in political-economic environments that are already characterised by high capitalisation in health care and the promise of new forms of knowledge production through the scrutiny of routinely collected health data.
This research is concerned with consent as data access management in three dimensions:
-
How do CHC Data Arks incorporate consent on a technical level?
-
How are organisational structures contributing to data access?
-
How are existing legal and ethical frameworks impacting design decisions for organisational and technical infrastructures?