Tuesday 23 August 2011

Dr Internet

Another issue I've seen both sides of over the last year or so is that of patients diagnosing themselves over the internet.

Doctors attitudes towards a patient who's been consulting Dr Internet seem often to be put down to "a little knowledge is a dangerous thing", but - as with anything - as someone who straddles the divide it feels infinitely more complicated.

As a patient, I don't think I would have a diagnosis now if it wasn't for Dr Internet. My condition is genetic, and as such I've always had it, and with the retrospectoscope I can see its stamp on my life from birth. However, it was joint pain that made me start looking for a diagnosis, but more than 2 years after first mentioning this to my GP nothing had happened. It wasn't until an internet friend mentioned her sister's diagnosis that I'd even heard of my condition, but within 5 minutes of googling I was convinced that it was the explanation for my joint pain and a lot else besides.

My GP was not convinced by my research, and it took a further 8 months for a rheumatologist to confirm my suspicions. She diagnosed me, told me there was nothing she could do for me, and discharged me. If it wasn't for the online support group I had found, I wouldn't have known that my condition was genetic or associated with other symptoms than the joint pain. Or really anything else about it. And yet, every time I try to share what I know with any of my doctors, they get really weird. Like I'm trying to undermine them.

I am honest with my GP. If I know something about my condition that he doesn't then I'll say so. Not in an "haha, I'm smarter than you" way, in a "if I don't tell you this it'll be a waste of time for both of us" way. I have consistently tried to get him to read one, simple BMJ article about the management and associated problems of my condition, but to no avail. So I continue to be the one out of the two of us who knows anything about it, and he continues to ignore that fact. My GP is far from being the only doctor who treats me that way.

It's the whole "well if you have all the answers why did you bother to come and see me?" / "I didn't spend years of my life training only to be replaced by a machine" / "if we both have the information what is my role?" thing. And I understand, really, despite my frustration.

We are not trained to deal with this situation. My medical school is fairly progressive, and it has never been mentioned. We are encouraged to respect a patient's experience of their own condition (although in my opinion this isn't talked about enough) but I have only rarely been encouraged to respect a patient's knowledge about their condition. Sometimes when we discuss sharing information with patients, we are taught to first draw out from them what information they already have, but in my experience medics are not good at this part unless we're breaking bad news.

When I am informed it disrupts the role that he has been taught to play as doctor, and it disrupts the role I have been taught to play as patient. There is always going to be an element of this for any medic who is consulting another doctor for treatment, but it is also true for a lot of individuals with longterm health problems - especially those with a rare condition who are used to dealing with doctors for whom they are a "once in career".

But, role disruption is not the only answer, and doctors are not unreasonable for being wary of Dr Internet. I am not naive. I too have seen the patients who come in with a sheaf of printouts about plague or whatever.

The lack of proper media education most of us received at school or thereafter is a really big deal. We are inclined to believe whatever we read, unless we have the resources to read critically. There is a lot of medical information on the internet, and a lot of it is nonsense. But Mr Jones might not know that. Mr Jones is not medical, he has no system for sifting the quite interesting from the potentially dangerous.

For this reason I believe that it is of supreme importance to realise that a lot of patients will have googled their symptoms, and will google the latin name you attach to their symptoms. A very good doctor I worked with suggested to patients "the law of one click" - don't go further than one link away from a reputable website.

Know how to direct your patients to good-quality information on the internet. In my experience, certainly for more rare conditions, this is best provided via condition or symptom specific support organisations, as more generic websites (such as the NHS health A to Z) can be based on outdated or over-simplistic information. However I think the NHS website has some great resources and you should encourage your patients to interact with it =)


Phew! That was a long one... I thought that tomorrow I might start looking at some news stories about disabled medics - they raise some interesting issues.


  1. One of my SSC consultants always said to his patients, basically, "I know you're going to look this up on the Internet and I don't want to stop you, but you should be aware that there is a lot of information and a lot of it's crap. So, as a starting point, I am going to write down a website address for you that I think is a good place to start. It is reputable and accurate and not American."

  2. I'm always astounded at how few doctors adress it. Even more astounded at how few provide written (or other format) information about what has been covered during appointment.

    Firstly, because so much of what is covered in clinics is the same for numerous patients, so a handout could easily be prepared in advance.

    Secondly, because we tell people complicated things...(e.g. take this tablet x1 the 1st day, x2 the 2nd and x3 the 3rd, then keep taking 3 a day