An alarming prognosis: How people affected by pancreatic cancer use (and avoid) Internet information
Chapple A., Evans J., Ziebland S.
This article looks at how patients with pancreatic cancer use the Internet, and considers its potential negative effects for people with a life threatening illness. We designed a qualitative study using semi-structured interviews collected by maximum variation sampling. Respondents were recruited from all over the UK in 2009/10. We interviewed 32 people with pancreatic cancer and eight relatives/carers of people who had recently died of pancreatic cancer. In contrast to a similar study we undertook in 2004, we found that the people interviewed in 2009/10 talked about using the Internet for health information as if it were a routine and unremarkable part of life. Patients gave few examples of harm from using the Internet, or of damage caused to their relationships with health professionals. We also found that patients and family carers were using a strategy to handle alarming information found online, with patients asking partners and family to filter what they found. In conclusion, concerns about serious negative effects of using the Internet for health information may be ill-founded, even when the Internet is used by patients with serious life threatening illness. Clinicians may worry that people will find unwanted or contradictory information, but it is probably counter-productive to try to steer people away from the web. Similarly, policy makers have focused on regulating the factual content of information on the web, but we found that it was the consequences of stumbling on factually correct, yet unwelcome, information that concerned the patients and their families in this study. Good practice guidelines and quality markers for health information may need to pay more attention to website design and user routing as well as factual content. © 2012 Policy Studies Organization.