The problem is that doctors, specialists in particular, are not immediately available and any consultation is, by necessity, time limited. Furthermore, we often do not remember well what we were told during a medical consultation, or we may think about relevant questions only when the consultation is over.
For many conditions there are multiple treatment options, each associated with different probabilities of improvements and different side-effects, making it important to consider the patients’ views. Sometimes even different medical specialists have different opinions. An informed patient can better contribute to shared decision making.
There is also a large field of lifestyle choices, where we are mostly left on our own in making decisions that have a significant impact on our health. There are many information and support needs that cannot be met through conventional healthcare.
Online health information
Access to online health information is regarded to have a positive impact. Those individuals who can better handle different sources of information, and have more of what is called health literacy, have been shown to live longer.
The Internet, though, can be quite confusing with irrelevant, contradictory and, sometimes, even fake information. Even just during the pandemic, we have seen a lot of Covid misinformation particularly in social media.
Medical specialists who have reviewed health websites have concluded that there is significant variation in relation to readability, reliability, and quality. Some studies have shown that even individuals with university education may struggle to identify accurate information sources.
Producing a readable health information website is a challenge: oversimplification denies the details, and the quantitative assessments of benefits and risks, that are required to make really informed decisions. Conversely, websites with too much information may leave behind the 7.1 million UK adults who read at, or below, the level of an average 9-year-old. A possible compromise is a simple summary alongside a longer more detailed report.
How to decide
If not all websites are reliable, how can we make sure that online health information is a gold mine and not a minefield?
Articles published in medical or scientific journal are subject to a peer-review process (an assessment by two other experts independent from the authors) that makes them more reliable. Despite this, not all medical articles have the same validity and some may have been superseded. Articles containing systematic reviews of the literature provide better evidence but may be focused on narrow topics.
Practice guidelines and good overviews on medical conditions, such as the ones published by Medscape, usually provide good information. However, all these articles intended for a medical readership can be difficult to read by the lay public.
Websites aimed at the general public are usually more appropriate. They include Wikipedia, the NHS, mayoclinic.org, familydoctor.org and various disease-specific charities.
Both the Patient Association (UK) and the National Institute on Aging (US) have published guidance on how to assess whether any information we find online is reliable. For instance, they suggest being more wary about websites linked to commercial organizations, as they may have vested interests, and checking whether the information has been updated in the last two years, as health knowledge goes out of date quickly.
Ideally health information websites should be subject to a certification process requiring compliance with the quality criteria proposed by various bodies such as Health on the Net Foundation and DISCERN on the Internet Project. Adopting the peer-review process used by medical journals would also be beneficial.
When we navigate the net, many of us have become accustomed to check whether we are visiting https websites with a closed padlock next to the URL. We know that these websites are safer in relation to fraud, phishing, or online viruses.
Why don’t we develop a scheme where certified health information websites, that meet quality criteria, could be easily identified, perhaps with a closed padlock in a particular colour?
Such a scheme would improve health literacy, something that we really need to reduce health inequalities and to help us to live longer.