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with science and business on profile raising and fundraising. These activities are amplified and monetised by traditional and digital media which ‘align with a consumer-driven model of digital patient activism’ (Petersen et al. 2019 : 489). Facebook and other social media platforms such as Instagram are where patients become involved in what Gerlitz and Helmond have called the ‘like economy’, where ‘like buttons enable multiple data flows between various actors, contributing to a simultaneous de- and re-centralisation of the web’ (Gerlitz and Helmond 2013: 1248