I heard a mother talking abut the MMR vaccine the other day. She said her first baby had it "because we didn't have the internet back then". But her subsequent children didn't, due to the "autism risk". Now that the Lancet have officially retracted the infamous Wakefield MMR paper, she says her children will be vaccinated in the near future.
She regards this decision-making process as empowerment. And she's not alone. All over the world, patients come to see their doctor with reams of internet print outs. They say things like "I know what the diagnosis is, so can you write me a prescription for drug X".
Undoubtedly, the internet has helped some people improve their healthcare. There are fora all over the web, where people with troublesome symptoms share stories of their eventual diagnosis, so others may prompt their GP or specialist to think about a similar diagnosis for them. The internet helps people compare GPs, hospitals and health tips. It's a source of support for those having children, or helping a loved one through serious illness. The internet definitely has its uses.
But then there's the flipside. The sheer volume of information out there means the quality information gets lost in a sea of nonsense. Recently I was searching for some good info on thimerosal for a friend, who was worried about its inclusion in the swine flu vaccine. Googling "thimerosal" threw up pages and pages of conspiracy theories. Big pharma was supposedly trying to engineer a pandemic in order to profit off vaccine sales. The Americans were using the vaccine as a vector for microchips, which would be used to monitor the more troublesome members of society. And if you got the swine flu vaccine you'd join the ranks of those who went before you, in an early grave.
This is, of course, the more extreme end of the spectrum. More worrying to anyone with a medical degree, are the amount of people who regard themselves as being well informed because they have delved further than the conspiracy websites. These people have......READ JOURNAL ARTICLES!!!!
The mother I mentioned in the first paragraph told me she has "read many journal articles about MMR and autism" and went on to tell me about some of them. Now, anyone who has ever been on the receiving end of this type of scientific discussion will know that, on the internet, any concept of study quality, p-values, confidence intervals or basic study design go out the window, head first. There's no mention of the hierarchy of evidence and not a hope of comparing it to the existing literature.
I'm not having a go at these people. I don't blame them for wanting to be informed. But my worry is that so many folk think they are highly informed about whatever drug they want, or whatever disease they may have. When the reality is they have just blindly accepted what's been written on the net by a stranger, rather than blindingly accepting what their doctor says. Is this really progress?
I've been a doc for about 7 years, and I don't regard myself as fully informed on a lot of the stuff that's waved in front of me. But I do have the ability to judge evidence, and to ask the right questions, as opposed to just accept something as fact because of the eloquent prose.
If I could get one message across to the public it is that just because something is a paper in a scientific journal does not mean we should take it as fact. Many (probably most) published papers don't give us "the answer". They give us a step in the right direction. Or the wrong direction in the case of the Wakefield paper.
I think the best thing any member of the public could do in order to become more informed about their healthcare is to pick up an old style paper book on stats.
As my old prof used to say.."If you haven't asked yourself 'how might this author be lying to me?', then you haven't read the paper".