How the Internet Is Transforming Health Experiences: Reflections from a Decade of Qualitative Research on Experiences of Cancer, Chronic Illness, Infertility and Bereavement

This study explores how people talk about the internet and how attitudes and cautions about different types of websites have changed over the last decade, drawing on comparative qualitative analysis of narrative interview studies, conducted during the years 2002- 2012.

In the early 2000s patients’ narratives suggested that only particularly engaged, expert and activated patients sought health information online. By 2010 the web had become an almost unremarked, routine part of people’s experience (eg ‘of course we all looked it up straight away’). The internet has transformed how people make sense of and respond to symptoms, decide whether to consult, make treatment choices, cope with their illness and connect to others.

Increasingly doctors are aware of this and recommend useful sites to their patients yet, even in 2012, respondents express reluctance to talk to their doctors about what they find online,  fearing that such revelations might damage the relationship. GPs have reported feeling threatened (having a ‘heartbeat moment’) when faced with a patient who uses the internet.

People want more than information online, they also want to find reflections, insights and practical advice from other patients. UK doctors may want more evidence about the health effects of using the internet but patients and the public are routinely online, even if they do not mention it in the consultation.  In this paper we consider why it is not yet routine to discuss websites in primary care consultations and the consequences for inequalities in health.