I have acne. Occasionally, I read online forums because I like knowing the experiences of other people with acne. For example, a long time ago I started using a prescription facial cream and wasn’t enjoying the side effects. I wanted to know how long I could expect these to last, so I browsed around some different forums and read dozens of different people’s experiences until I’d satisfied my curiosity.
People enthusiastic about ‘asking for evidence’ might be critical of my decision to take health advice from random strangers on the internet. I think that’s a patronising attitude to take. (Disclaimer: I’m a 2016 ‘Ask for Evidence’ ambassador. Please don’t fire me.)
I didn’t base my decisions on the random strangers alone:
- I asked my GP when I got the medication about side effects
- I read NHS Choices
- I read WebMD
- I asked a Real Dermatologist who I know personally
Discussion forums were one component of my decision to keep using the medication. But they were a very useful one that provided something none of the others did: patient experiences. I think there’s something valuable in hearing from normal people as well as medical professionals, and anecdotally from my personal experience the advice given seems pretty good.
how bad is dangerous?
So I really enjoyed this recent paper by Cole et al. (2016): “Health Advice from Internet Discussion Forums: How Bad Is Dangerous?”
The authors selected 25 discussion threads offering health advice about three conditions (HIV, diabetes, and chickenpox) on three websites (Reddit, Mumsnet, and Patient). They then got eight qualified doctors and nine non-doctors to assess how accurate, complete, and sensible the threads were.
Perhaps somewhat surprisingly, the information provided on the threads was mostly considered to be “reasonably good” with only a small amount assessed as “poor”. And even for the “poor” information, the authors noted that:
The forums that contained the most inaccurate or controversial information also contained counterbalancing comments that appear able to dilute the potentially harmful consequences of the poor quality information.
So even when there’s bad advice, other people are usually on hand to call it out even if the reader might not pick up on it (which I suspect they often would).
There are a few criticisms that could be made of the study. It’s quite small and focused on a small number of conditions (but to be fair it was a pilot study for a PhD). The analysis combines assessments from doctors (58 of 79, 73%) and non-doctors (21 of 79, 27%) which I find slightly confusing as (a) it’s such an obvious criticism, (b) it seems it wouldn’t be much effort to separate out, and (c) I would doubt it has much of an impact on the conclusions.
The study contributes to existing evidence that the majority of health information online is good (~60-70%) with just a small proportion “genuinely inaccurate” (~5-7%). I look forward to future publications from Cole et al. on this topic. I’d be particularly interested to know what the quality of advice is like on patient websites for specific diseases vs. more general sites like Reddit (guess where the quality of information was most variable?).
(mostly) not terrible
Health advice on the internet is (mostly) not terrible. I think we need to recognise that there’s a whole spectrum of medical advice out there: sufferers of a condition sharing their experiences of different drugs is very different from a recommendation to drink bleach to cure multiple sclerosis. Horror stories of bogus companies selling quack cures (and there are many) shouldn’t stop us using the internet alongside more traditional healthcare routes e.g. talking to qualified practitioners.
Every day, the internet contributes to the healthcare decisions made by millions of people. That contribution can only rise. Doctors can’t do anything about this – and they shouldn’t. We should be educating people about how and where to look for advice, not telling them not to.
“Data from all survey results including links to the actual question as it appeared on the discussion forum website ” is available…
…as a pdf 😦