Abstract
Public-private partnerships (PPPs) are established to specifically harness the potential of Big Data in healthcare and can include partners working across the data chain—producing health data, analysing data, using research results or creating value from data. This domain paper will illustrate the challenges that arise when partners from the public and private sector collaborate to share, analyse and use biomedical Big Data. We discuss three specific challenges for PPPs: working within the social licence, public antipathy to the commercialisation of public sector health data, and questions of ownership, both of the data and any resulting intellectual property or products. As a specific example we consider the case of the UK National Health Service (NHS) providing patient data to Google’s DeepMind AI program to develop a diagnostic app for kidney disease. This article is an application of the framework presented in this issue of ABR (Xafis et al. 2019). Please refer to that article for more information on how this framework is to be used, including a full explanation of the key values involved and the balancing approach used in the case study at the end. We use four specific values to help analysis these issues: public benefit, stewardship, transparency and engagement. We demonstrate how the Deliberative Framework can support ethical governance of PPPs involving biomedical big data.
Highlights
Realising the potential of Big Data requires an environment for trusted data sharing across multiple sectors
Public-private partnerships (PPPs) are established to harness the potential of Big Data in healthcare and can include partners working across the data chain— producing health data, analysing data, using research results or creating value from data
We demonstrate how the Deliberative Framework can support ethical governance of PPPs involving biomedical big data
Summary
Realising the potential of Big Data requires an environment for trusted data sharing across multiple sectors. The EU has funded a number of initiatives to bring public and private organisations together to share data and support innovation One such project was Etox, which united multiple pharmaceutical companies and several public partners to share data from pre-clinical in vivo toxicity research and produce a data pharmaceutical toxicology database. The European Union has launched a new project called Public Private Partnerships for Big Data It will build on lessons from national data sharing initiatives (such as France’s Terelab and the UK’s Open Data Institute) to establish “Innovation Spaces (i-Spaces)” (European Commission 2014). In addition to technical platforms such as i-Spaces, the PPP will fund legal research to address barriers to data sharing in the EU—including work on data portability, ownership and the role of intellectual property This example illustrates the diversity of PPPs arising in relation to. Biomedical data, including not just sharing data and collaborating on data innovation pathways and legal research
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