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Today, patients are using the internet and other technologies as well as fellow patients to diagnose their own problems, find the best treatment, continually optimise their treatments, and even fund and conduct research.1 They are doing this not thanks to, but despite, healthcare.
The impression is that many clinicians would rather patients didn’t use Google for healthcare, and patients are keen not to annoy the people whose help we need. Of course, patients with chronic or long term conditions can become experts in their illness, but patients who show clinical knowledge sometimes experience disbelief or even active opposition from professionals. Work by The BMJ’s former patient editor Rosamund Snow showed how people with type 1 diabetes and high health literacy were hindered by healthcare professionals who were not experts in the specialty.2
What should the new healthcare look like? We don’t know for sure, but 17 years ago, Tom Ferguson, a health informatics professor, argued that physicians and other healthcare professionals should embrace the efforts of active patients.3 He said that granting patients’ wishes for more online communication with their doctors could reduce consultation times. He coined the term ‘e-patients’ to mean patients (or their friends or relatives) who seek health related information online,4 which results in ‘better health information and services, and different (but not always better) relationships with their doctors.’5
How I became an e-patient
I was 32 when I had Parkinson’s disease diagnosed in June 2003, but I had known that something was wrong for almost 18 years. I experienced the first symptoms in my teens, and a few years later was diagnosed as having generalised dystonia.
I researched this diagnosis for hours in the library in the suburb of Stockholm where I grew …
This article was first published in The BMJ. Cite this article as: BMJ 2018;360:k846.
Competing interests None declared.
Provenance and peer review Commissioned; not externally peer reviewed.