In this online age, access to medical information is faster and simpler than ever before. The ease with which patients can search for symptoms, diagnoses and treatments has plays a big role in the the e-patient 1 movement. About 5% of all internet searches are about medical information 2 .
Support groups, patient advocacy groups and condition specific websites are all over the internet. Websites specifically for people with shared health conditions can promote a sense of community and provide social support3. This social support can be through sharing information, providing guidance or simply making friends. 1 in 4 internet users with a chronic condition go online specifically to meet people in similar situations4.
The response from most healthcare professionals has been cautious at best and down right hostile at worst 5. This hostility (somewhat ironically) has ended up all over the internet.
If you’re as social media obsessed as me I’m sure you’ve seen many of the same memes I have.
“Don’t confuse your Google search with my Medical Degree”
When I first saw this it really made me cringe and I’m going to explain why.
My first issue is the attitude. One of my favourite changes in the medical profession over the last few years is in the patient / professional relationship. The above statement is just so patronising. It takes us right back to the days of ”yes Doctor” as a response to any and all suggestions.
Not having a medical degree does not prevent patients from reading peer-review articles. The fact that information comes from the internet does not automatically make it inaccurate. Many online platforms self-police the accuracy of users information and make sure inaccurate information is removed. As a healthcare professional I volunteer a lot of time giving advice and support in online groups. I’m not alone either, lots of condition specific groups have healthcare providers on the admin team.
I’ll go a little off track here to explain my very personal reasons for disliking the above statement. When I was 19 I googled vague descriptions from a physiotherapist along with a range of symptoms I’d lived with for years. I came out with a probable diagnosis of Hypermobile Ehlers Danlos Syndrome. If you’re a healthcare provider and not a regular reader of my blog you’re probably scoffing at this. It’s a condition that affects around 1 in 5000 people, there’s no way I have it? Well, I do. My diagnosis was confirmed at few months after I suggested it to my GP.
I was very lucky at the time, my GP not only listened but did their own research based on my suggestion. I was sent to a fantastic team of specialists. Until my diagnosis I’d repeatedly been told I would be fine. It was just growing pains. It’s all in my head. I do too much sport. All gymnasts get injured.. the list goes on. My hospital failed at every opportunity to look into my pain, injuries, fatigue, bruising, rubbish proprioception, clunky joints and digestive problems. Any investigation into one symptom always ignored the others.
When I finally got a diagnosis it was as a direct result of Dr Google. Pretty much every treatment, medication, clinic and expert I’ve seen since has also been discovered on the internet. I’m very lucky that my healthcare team (for the most part) are open-minded about my the use of internet resources.
A while back I had a tooth extraction under general anaesthetic. The anaesthetist was amazed at how detailed my research was. The team listened to all of my suggestions. As a result, I was home less than three hours after the general wore off. No complications. Where did I get these suggestions? The internet.
My second major problem with the above statement is the hypocrisy.
On multiple occasions I’ve st(rolled) into an appointment to see a health care professional googling Ehlers Danlos Syndrome. On more than one occasion I’ve had one of these healthcare professionals attempt to tell me all about it. The thing is, I already know. Some of the info that comes up on the first page of google is written by me!
It would seem it’s ok for healthcare professionals to use google (any not even the scholar bit) but your average patient can’t?
How did all the doctors get their MD’s without using internet searches? When I wrote my OT dissertation, all of my literature review articles came from the internet. Is it so hard to believe that patients have access to similar resources?
Instead of flat-out disregarding anything brough in by patients I would recommend asking the following questions.
Where did you get the information?
If the answer is “an opinion piece on a friends blog” then take it with a large pinch of salt. If the answer is “From an Information Standard accredited charity” then you know the information can be trusted. It’s at least worth considering! Often google searches lead you to open access medical journals, clinic’s own websites or websites written by other healthcare professionals.
When was it written?
Medicine is a constantly evolving practice, anything over 10 or even 5 years old is likely to be of limited use. The worlds leading experts in Ehlers Danlos Syndromes have recently (March 2017) published loads of new research which is publicly available to patients and professionals alike6.
Patients are increasingly being able to access larger, more recent and more technical amounts of medical research. We’re not satisfied with a passive role in our own healthcare. I think this is something to be encouraged. Instead of a blanket ban on patients using google, teach them how to spot and apply good quality information2.
Top Tips for e-Patients
- Look for the Information Standard Logo. IS accreditation insures that what you’re reading is of a quality used by the NHS. Basically, to get the IS accreditation the publishing organisation has made a huge commitment to put across clear, evidence based and up to date information7.
- Always read beyond the answer. Finding one piece of evidence isn’t enough to support an opinion, read information from multiple sources. If you think you’ve found the answer try searching for the opposite opinion and reading some of that research.
- Keep it current. If the only mention of a treatment or condition is from 1975 chances are it’s not worth pursuing. When researching for anything I disregard any sources older than 10 years unless they’re often referred to in recent research.
- Back up blogs. If you’re reading something (like this) then don’t simply take the authors word for it. Ask them where they get their information from or search on your own. For every blog post I’ve ever written there is academic evidence saved to my ‘favourites’ or downloaded. I actively encourage you to challenge things I’ve written.
- Read the references. Even Wikipedia comes with a reference list these days. If there is a reference list, it can lead you to more information.
Once you’ve done your research it’s time to approach your Dr. Remember, Healthcare professionals are people too. It takes work from both sides to create a good therapeutic relationship.
I hope this has given you a few things to think about, whether you’re a patient or a professional. If you have anything to add I’d love to hear it. Questions and comments are always welcome.