At the recently concluded #hcsmph2017, a question was asked during the Unconference –
Is self-diagnosis online valid?
The question was raised in relation to mental health and answering online questionnaires to see if one is depressed. Another participant had also asked the same question, relating how a friend’s father had died of stroke because of a neglected headache. Apparently, the family members had relied on Google search and delayed going to the doctor. This inspired me to have this topic for the next #HealthXPH tweet chat on 29 April Saturday, 9 pm Manila time. I had previously written about Dr. Google and why self-diagnosis annoys doctors.
T1 As a healthcare professional or patient, how useful are online symptom checkers or screening tools?
A quick PubMed search led me to work by Ameringen VM et al, Internet Screening for Anxiety Disorders: Treatment-Seeking Outcomes in a Three-month Follow-up Study. Psychiatry Res. 2015 Dec 15;230(2):689-94. doi:10.1016/j.psychres.2015.10.031. Epub 2015 Oct 30.
… 51% sought treatment after completing the MACSCREEN. In the 49% who did not seek treatment, fear of medication (57%), discomfort talking to their doctor about anxiety (28%) and the belief that symptoms were not severe enough (28%) were cited as barriers.
It is striking that less than half of those who met criteria for anxiety or mood disorder using the online screening tool sought treatment.
Another study looked at the accuracy of the Boots WebMD symptom checker in the self-diagnosis of ENT Symptoms by Farmer SE et al. Clin Otolaryngol. 2011 Oct;36(5):517-8. doi: 10.1111/j.1749-4486.2011.02375.x. Of 61 patients, the WebMD symptom checker 70% (n=43) included the correct diagnosis but only 16% (n=10) of these included the correct first diagnosis. Hence the authors concluded that the symptom checker provided a large number of differential diagnoses which may be inappropriate. The symptom checker completely missed the correct diagnosis in 30% (n=18).
T2. How can healthcare professionals support patients when they search online for health information?
Lydia Nayer writes in Affinity Magazine –
In an ideal world, everyone would have access to proper medical care without the fear of stigma and abuse due to their medical condition. However, since this is not an ideal world yet, we must accept that many people will self-diagnose and we should respect their diagnosis and support them in seeking treatment. Instead of worrying that people who self-diagnose are “faking” or “attention seekers”, we should focus on creating a healthcare system free of bias and accessible to all, no matter their background.
In my Google search on this topic, I ran into another term self-advocacy. Morgan White writes about the difference between self-diagnosis and self-advocacy –
Self-advocacy involves educating yourself on your symptoms and behaviors in regards to your health… Living with a disorder does in fact exist outside of the medical context. Disorders do not become real only when diagnosed by a professional. Those without access to a diagnosis still have the disorder, and a self-diagnosis can help them cope. A diagnosis is simply an explanation for why you are who you are. Labeling yourself with a disorder or illness can help you understand your actions and feelings and learn to cope with your disorder. It enables you to find a community of people who understand and support you. Self-diagnosis leads to you making sense of yourself.
Also at the #hcsmph2017 Unconference, a participant who was a librarian stood up and asked if doctors are threatened by Dr. Google. They shouldn’t be! Doctors need to accept that Morgan White has written in the excerpt above, which I repeat here for emphasis – Disorders do not become real only when diagnosed by a professional. I’ve had patients consult me who are unbelievably calm when I tell them the diagnosis – because they already know. They are not in shock but often feel relieved, even if it means that their worst fears have been confirmed.
T3. What advice would you give for those who seek health information online?
I always mention Medline Plus when asked. Their page on Evaluating Health Information is a good place to start. I also recommend looking for the Health on the Net (HON) code seal though many websites do not apply for certification hence limiting its usefulness. Better if their physician can give an internet prescription, a curated list of websites for further reading after a consultation.