Why patients’ stories work

I just googled ‘the power of the anecdote’ and two sites came up that exactly illustrate the problems we have with this in public involvement in research.

The first site, Ben Goldacre’s Bad Science, talks about how anecdotal reports of the effects of treatments can be potentially misleading, while clinical trials provide the best estimate of the true benefits of a drug. Of course this is right – it’s the reason we do research and why we support the development of evidence-based medicine.

However, when the patient perspective is brought into the research world, some researchers want to apply the same rules. They can dismiss patients’ stories, because they’re not good ‘evidence’. It seems researchers are not quite sure how to use the experiential knowledge that patients provide.

This is where the lessons from the second site ‘Presentation Pointers’ come in. This site encourages the use of anecdotes in presentations because they say anecdotes are one of ‘the most powerful communications tools ever discovered’. I think this describes the true value of patients’ stories. They have the power to communicate and therefore the power to challenge researchers’ assumptions.

I can tell you a great story to illustrate this point. I recently interviewed a researcher who told me how a patient’s anecdote had had a dramatic impact on a NICE committee evaluating new treatments. This committee was reviewing two forms of insulin for the treatment of diabetes. On paper, the clinical data suggested that both forms were equally good at reducing blood sugar, but the newer version cost more money – suggesting it wasn’t any more cost-effective. However, a diabetes patient who was at the meeting, alerted them to an important difference between the two forms – a difference they weren’t aware of. He explained that the older, cheaper version was more likely to result in hypoglycaemic attacks, and he said ‘Sometimes I don’t take my insulin at night, because I’m afraid I might not wake up in the morning.’ This statement challenged the committee’s assumptions about benefits. It sparked a ‘lightbulb moment’ in a way that a report of the patients’ experience describing ‘non-adherence to treatment’ might not have done.

I think patients’ stories work precisely because they’re anecdotal. If we try to turn them into evidence – by researching patients’ views and producing technical reports – we are in danger of losing their impact and value. We need stories in the patients’ own words, and they are probably best spoken by patients.

Anything else is dis-empowerment.