Making sense of health information

A couple of people have asked me why I'm interested in patients' sensemaking, and what the problem is with all the health information that's available on the web. Surely there's something for everyone there? Well maybe there is (though it doesn't seem that way), but both our studies of patients' information seeking and personal experience suggest that it's far from straightforward.

Part of the challenge is in getting the language right: finding the right words to describe a set of symptoms can be difficult, and if you get the wrong words then you'll get inappropriate information. And as others have noted, the information available on the internet tends to be biased towards more serious conditions, leading to a rash of cyberchondria. But actually, diagnosis is only a tiny part of the engagement with and use of health information. People have all sorts of questions, such as "should I be worried?" or "how can I change my lifestyle?", and much more individual and personal issues, often not focusing on a single question but on trying to understand an experience, or a situation, or how to manage a condition. For example, there may be general information on migraines available, but any individual needs to relate that generic information to their own experiences, and probably experiment with trigger factors and ways of managing their own migraine attacks, gradually building up a personal understanding over time, using both external resources and individual experiences.

The literature describes sensemaking in different ways that share many common features. Key elements are that people:

• look for information to address recognised gaps in understanding (and there can be challenges in looking for information and in recognising relevant information when it is found).
• store information (whether in their heads or externally) for both immediate and future reference.
• integrate new information with their pre-existing understanding (so sensemaking never starts from a blank slate, and if pre-existing understanding is flawed then it may require a radical shift to correct that flawed understanding).

One important element that is often missing from the literature is the importance of interpretation of information: that people need to explicitly interpret information to relate to their own concerns. This is particularly true for subjects where there are professional and lay perspectives, languages and concerns for the same basic topic. Not only do professionals and lay people (clinicians and patients in this case) have different terminology; they also have different concerns, different engagement, different ways of thinking about the topic.

Sensemaking is about changing understanding, so it is highly individual. One challenge in designing any kind of resource that helps people make sense of health information is recognising the variety of audiences for information (prior knowledge, kinds of concerns, etc.) and making it easy for people to find information that is relevant to them, as an individual, right here and now. People will always need to invest effort in learning: I don't think there's any way around that (indeed, I hope there isn't!)... but patients' sensemaking seems particularly interesting because we're all patients sometimes, and because making sense of our health is important, but could surely be easier than it seems to be right now.