Technology has revolutionised how we access information, particularly health-related information. We’ve moved from an era of having information pushed to us through a few channels, such as radio, to one in which we pull the information we want, when we want it, from an enormous array of different channels. The Internet is, perhaps, the most important of these channels.
The concept of the ‘informed patient’ has stemmed from this shift. Patients have become more engaged in their healthcare and come to their doctor appointments with printouts and preconceived ideas. They are less likely to accept what they are told, often seek a virtual ‘second opinion’, and may comment on their experiences in a blog or on a noticeboard. In a 2005 US study by Hesse et al, over 6,000 patients were asked where they imagined they would look for information after being diagnosed with cancer and, in those that were actually diagnosed with cancer, where they ended up looking. Although people imagined that their doctor would be their first point of call, in reality most patients went online first, doctor second.1
Whilst ‘being informed’ through online research has many positives, it also has drawbacks. Although patients may be armed with information they have found on the Internet, they are not always best positioned to filter, critique or assimilate this information. As the computer pioneer, Mitchell Kapor, stated, “Getting information off the Internet is like taking a drink from a fire hydrant”. The quality of the information on the Internet is also highly variable. Although initiatives, such as the HONCode initiative, confer some guarantee that information on endorsed websites is correct, as patients turn to unregulated sources of information, such as patient blogs and noticeboards, the information often becomes more anecdotal and biased.
One of the consequences of the ‘informed patient’ is therefore the need to provide accurate, up-to-date and targeted online patient information. This poses an interesting question. Who is responsible for monitoring whether this information is accurate or not? Some would argue that the pharmaceutical and devices industries bear this responsibility, as accurate information ensures the effective and safe use of their products. Others would claim that the onus is on healthcare providers, or the healthcare system as a whole, as effective patient education is essential to effective disease management. Or perhaps the responsibility lies with the patients themselves, through patient advocacy groups, as ‘expert patients’ are best positioned to understand what kind of information other patients really need. One thing is clear. Without defining who is responsible, the ‘informed patient’ may not end up translating into a ‘healthier’ patient.
- Hesse BW, Nelson DE, Kreps GL, et al. Arch Intern Med 2005;165(22):2618-24.