Friday, 31 August 2012

Inarticulate? The challenges of health information seeking

Showing impeccable timing, three people I care about have fallen ill at the same time. To make sense of what it happening to each of them, I have been doing a lot of internet searching. And it has become really clear that – as a lay person – some health information needs are much easier to satisfy than others. Paradoxically, it's the more technical ones that are easier to work with. Or more precisely: the ones for which a key technical term is provided (e.g. by a clinician).

In one case, we were told that Bert (not his real name) needed an angioplasty. I had no idea what one of those was, but a quick search on the query term "angioplasty" gave several search results that were consistent with each other, comprehensible and credible. Following up on that and related terms has meant that I now (rightly or wrongly) feel that I understand fairly well what Bert has gone through and what implications it has for the future.

In a second case, Alf (also not real name) told me that the excruciating pain he had been experiencing had been diagnosed as gallstones, and in particular a stone that had lodged in the bile duct. The treatment was a procedure (not an operation) that involved putting a tube through his nose and down into his gall bladder and removing the stone. Any search that I tried with terms such as "gallstones", "removal", "nose" led to sites about "cholecystectomy" (i.e. either laparoscopic [keyhole] or open surgery). We both knew that Alf had not had an operation. It took hours of searching with different terms to find any information that even approximately matched what Alf and I knew. Eventually, I tried terms involving "camera" and "gallstones", which led to "endoscopy". As I type, I believe that Alf had a "endoscopic retrograde cholangiopancreatography". I can't even pronounce those terms, never mind spell them. But if you know the terms then there are pretty good descriptions of what they involve that really helps the lay person to make sense of the treatment.

In the third case, Clarissa (not real name) was incredibly tired. Her doctor had dismissed it as "a virus". I've seen a virus being defined as "a condition that the doctor can't diagnose in detail but isn't worried about". But this "virus" had been around for weeks. What is happening? Well most internet searches that involve the word "fatigue" and any other symptom seem to lead to results about "cancer". That's not what you want to find. And it's not what I believe. I'm still trying to make sense of what might be affecting Clarissa. I don't have a good search term, and I can't find one.

Health is an area that affects us all. We all want to make sense of conditions that affect us and our loved ones. But there is a huge terminological gulf between lay language for describing health experiences and the technical language of professionals. If you know the technical "keys" then it's easy to find lay explanations, but the opposite is not yet true: if you only have a lay way of talking about health experiences then there's no easy way to tap in to a sophisticated health information understanding. This isn't an easy challenge; I wonder whether anyone can rise to it.

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