The ability to access and disseminate information through digital communication networks (eg internet, mobile phones) is changing societal activities including national politics and accountability. Using digital communication, lay-controlled networks with particular health interests are becoming powerful, political lobby groups. We sought to describe these networks, the impact they have and how this varies. Scoping searches of published literature established the extent to which they are documented and sought evidence of their prevalence and characteristics. We then undertook case studies of between three and five networks, explored their structure, function, participants, impact, how they came into being and sustain themselves, and what changed as they matured. Case studies drew on literature, online material and key-informant interviews. This exploratory study built on the research team's theoretical work and was complemented by secured funding for research team visits. Lay-controlled networked communication is likely to increase as the public seek to use it to improve their situation. Those responsible for healthcare provision will need to understand the potential impact and how to respond to enhance benefit and limit harm, whilst respecting individual autonomy. Impact may be greater in countries where accountability of health providers and associated governance is weak.
Presentation at the Internet, Policy and Politics Conference on 'Crowdsourcing for Politics and Policy', Oxford, September 2014 -
The research team was:
University of Warwick
Prof Frances Griffiths (Principal Investigator)
Dr Xavier Gómez Olivé (University of the Witwatersrand, Johannesburg, South Africa)
Dr Jane Goudge (University of the Witwatersrand, Johannesburg, South Africa)
Prof Kavé Salamatian (Université Pierre et Marie Curie, LISTIC-Polytech, Annecy Chambéry, France)