Guest Blogger Post: Patients Who Google

Please Welcome guest blogger, Linz Middlemiss, to Fighting Fatigue. Linz was a weather forecaster and yacht racer until she developed very severe Fibromyalgia. She now devotes much of her time to improving Fibromyalgia Awareness and treatment, particularly in the UK. She is 27, married and live in Berkshire, UK. Please read more about Linz and her websites at the end of this post.

Toni Brayer MD over at EverythingHealth has done a post on Patients who Google, following an article in Time Magazine from a Dr Haig who couldn’t tolerate a patient who “googled” him.

If you read the original article you will see that although the googling habits of the patient were what received the brunt of Dr Haig’s displeasure, the patient in question was pretty rude by any standards. I expect to be treated with respect by the doctors I see…and I will treat them with respect in return. That seems to be common manners. While looking up a specialist’s work history, publications and learning a little about a subject before seeing a doctor seems to me to be sensible, I see no benefit in knowing where they live or whether they are married and if I stumbled across such information, would never refer to it.

Dr Brayer says in her response to the article….

“[the Time magazine article] made me stop and think about patients who “google”. They often send me articles they have discovered about their illness or bring information they have downloaded. Many times the information is not exactly evidence based nor well researched. There are a plethora of experts with “Doctor” in front of their name that tout research that was published in an obscure journal. Other times it is anecdotal or advertisements. The internet can be a wonderful thing but one needs the ability to sift through the junk. When it comes to health, that is my role.

Despite the fact that there is very little a patient can bring me that I don’t already know…I don’t disdain the effort. An involved patient is one I can work with. I try to show respect for whatever product or treatment they are asking about but I don’t hesitate to give “the other side of the story” if there is evidence against it. Many times it wont hurt anything but their pocketbook and I tell them so.

Here is what I don’t like, however. I don’t like it when a patient wants me to research something obscure. If they have heard of a new medication or treatment that is not yet proven, I ask them to get the information and I’ll review it. According to a recent study in Annals of Internal Medicine, primary care physicians already spend almost an entire DAY a week doing unreimbursed work between patient visits. I want the patient to do the “googling”, not me. I’ll do the interpreting, if asked, at the time of the next office visit.”

I like that Dr Brayer sees it as her role to sift through available information and interpret it and I like that she acknowledges that the patient doing the googling often saves the doctor time (or gets it done when the doctor simply doesn’t have the time). I think I have always acknowledged that doctors usually do not have the time to devote to individual patients that we (and possibly they) would like. And as she says “An involved patient is one I can work with”. Expert patients feel in control of their health, often are more willing to try treatments and may come up with alternatives that the doctor hasn’t considered. Expert patients do better.

What Dr Brayer doesn’t acknowledge is that expert patients can know more about their condition than the doctor. Unless you are seeing a specialist in your particular condition then you will have more time to devote to research into the specific condition than, say, a GP, who sees plenty of children with colds and few patients with complex neurological conditions. With Fibromyalgia, my experience is that many doctors have not enlarged on what knowledge of Fibromyalgia they gained during their training. Given that they may have had no lectures in the condition at all and just picked up a few bits of information in passing, that are now likely to be out-of-date, it is not hard for a patient to know more about Fibromyalgia than a doctor.

And that doesn’t even take into account the patient experts, who have crossed the line from knowing about how their condition affects them, to knowing about the condition generally. I have only met 2 or 3 doctors who know as much about Fibromyalgia as me and they are the top of their field, internationally recognised experts. I went to a symposium on neuropathic pain recently, which was aimed at doctors with a specialist interest in pain management, and I still knew more than them about Fibromyalgia, Chronic Myofascial Pain and their treatments.

Googling isn’t always the best way to find information and by doing so you will find a host of poor information sources. Simple errors, such as transposing two letters in a name, will mean that you only find bad information. I tend to recommend that straight googling is mainly used to find reputable sources of information. National charities specialising in the condition are usually a safe bet and websites from government organisations, or well renowned hospitals, such as the Mayo Clinic are also pretty safe bets, although the information may still not be accurate, complete or up-to-date. If you want to learn about your condition and find evidence-based science to take to your doctors, then you need to be reading peer-reviewed research articles. Some magazines, such as FaMily magazine (the UK magazine for people interested in Fibromyalgia), have sections distilling and explaining latest research, or you can keep an eye on what’s happening by using websites such as my blog. Keeping up-to-date with research takes time, a lot of time and that’s why the doctors don’t do it.

In this time and age when guidelines are available on how to cite weblogs in scientific papers, the medical profession needs to stop having a mental block when a patient mentions the word “internet”. They may have just typed their symptoms into Google and seen what came out or they may have reviewed the last five years peer-reviewed literature on the subject, using a website such as PubMed. Just because research has been done on the internet, it doesn’t mean that it is bad research.

Doctors also need to get better at recognising and acknowledging expert patients and patient experts. I do not consider myself to be as skilled as a doctor – I would have no clue what to do about a heart attack or someone giving birth and could not perform even minor surgery. But when it comes to my condition, I am an expert and if doctors refuse to listen simply because I cannot put MD after my name, then they are losing out and not treating me with respect. Why should I then continue to treat them with respect?

Lindz is very active in providing support and raising awareness for Fibromyalgia. Please check out the sites listed below and show her some support! Thanks for a wonderful post, Lindsey!

Lindz also runs the West Berkshire ME and FM Group Website. This group is for anyone affected by or interested in Fibromyalgia or ME-CFS in the West Berkshire region of the UK. The group provides support and aims to raise awareness and make a real difference to sufferers locally.