How the Internet Is Transforming Health Experiences: Reflections from a Decade of Qualitative Research on Experiences of Cancer, Chronic Illness, Infertility and Bereavement
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Abstract
Background
Not so long ago, when the internet was new, there was a small moral panic about the consequences of health information escaping doctors’ control. Variously, and not unrelated to health system funding, commentators feared that waiting rooms might come to resemble ghost towns, or conversely that surgeries would run late as patients with ‘sheaves of printouts’ expected to spend hours discussing unfounded health concerns. Would patients be an easy prey for charlatans or hopelessly confused by the sheer volume on online information? And what about the danger that a digital, or generation, divide would increase social exclusion?
Objectives
To use qualitative analysis to consider how people talk, in interviews, about use of online health information in different health conditions and how attitudes and cautions about different types of websites have changed over the last decade.
Methods:
Comparative qualitative analysis of four sets of narrative interview studies, all conducted by the Health Experiences Research Group (University of Oxford) during the years 2002- 2012. Particular attention was paid to the language that participants used when talking about the internet.
Results
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 2013, respondents express reluctance to talk to their doctors about what the find online, fearing that such revelations might damage the relationship.
Overwhelmingly people describe benefits from using the internet. A possible exception is those experiencing issues that may isolate people from their immediate social world (such as infertility or bereavement): in such cases connecting with others online can be greatly valued, but also reinforce isolation.
Conclusion
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.
Not so long ago, when the internet was new, there was a small moral panic about the consequences of health information escaping doctors’ control. Variously, and not unrelated to health system funding, commentators feared that waiting rooms might come to resemble ghost towns, or conversely that surgeries would run late as patients with ‘sheaves of printouts’ expected to spend hours discussing unfounded health concerns. Would patients be an easy prey for charlatans or hopelessly confused by the sheer volume on online information? And what about the danger that a digital, or generation, divide would increase social exclusion?
Objectives
To use qualitative analysis to consider how people talk, in interviews, about use of online health information in different health conditions and how attitudes and cautions about different types of websites have changed over the last decade.
Methods:
Comparative qualitative analysis of four sets of narrative interview studies, all conducted by the Health Experiences Research Group (University of Oxford) during the years 2002- 2012. Particular attention was paid to the language that participants used when talking about the internet.
Results
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 2013, respondents express reluctance to talk to their doctors about what the find online, fearing that such revelations might damage the relationship.
Overwhelmingly people describe benefits from using the internet. A possible exception is those experiencing issues that may isolate people from their immediate social world (such as infertility or bereavement): in such cases connecting with others online can be greatly valued, but also reinforce isolation.
Conclusion
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.
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