‘User Generated Data’ from Online Patient Forums: Potentialities and Constraints for Social Research

The relationship between patients and health care professionals has changed significantly in the past two decades or so in the UK and beyond. Today’s patients are ‘consumers’ of ‘services’ who can read reviews of health care professionals and increasingly also ‘performance measures’, such as mortality rates of surgeons, before choosing where to go, and ‘rate’ (Lunich, Rossler & Hautzer 2012) the care they received, on the National Health Service’s ‘NHS Choices’ website and other online spaces. They are also at the same time increasingly recognized as ‘experts’ in their own right (Fox et al., 2005; Shaw & Baker 2004), who ought to participate in decisions previously made by doctors and other health care professionals alone. Where previously many patients relied primarily on doctors for information about symptoms, conditions and treatments, they now also turn to online health information sites and social networking sites, where they can ‘tell their stories’ and talk to other patients, discussing experiences, learning from and advising others