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Open Access Publications from the University of California

New modes of engagement for big data research

  • Author(s): Winickoff, DE
  • Jamal, L
  • Anderson, NR
  • et al.

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© 2016 Informa UK Limited, trading as Taylor & Francis Group. Health leaders in the US and abroad are seeking to aggregate diverse health data from millions of people to enable new architectures for research. The integration of large health data sets raises significant social and ethical questions around the control of health information, human subjects research protection, and access to treatments. Because of the social stakes involved, policy-makers have begun to consult and engage publics with the idea that this might improve the quality, credibility, or relevance of big data health research. While policy-makers aim to engage publics, they might learn from experiments in patient engagement emanating from the private sector and patient advocacy organizations. Three modes of engagement have co-evolved out of new information technology and the cultures of disease advocacy: crowdsourcing, social networking platforms, and dynamic consenting. These modes of engagement are promising avenues of responsible innovation. Together, they project an alternative and more democratic vision of health research emphasizing citizen science, communicative reason, and the engaged research participant.

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