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Whenever I need to know anything nowadays, I mostly just look on the internet and sometimes I ask my virtual PA ‘Alexa’ to look for me! I even dabble in artificial intelligence (AI) (but I tread carefully on both). However, you need to be very careful in acceptance of what is credible information and what isn’t.
As a relatively experienced health blogger and activist, I like to think of myself as ‘internet savvy’, so I occasionally find myself using ‘Dr Google’ to diagnose my own aches, pains and unusual feelings (and I confess to using it to help others). I mostly find there are no real or definitive answers online for many patient- reported issues. All of that said, there is no doubt that I am a big supporter of using Google for my own issues and to help others, either via my blog posts or to help answer someone’s question in my patient group using those skills.
Although I seem to learn something on each piece of research, I also find some really worrying stuff. Some symptoms can have dozens of reasons and I often realise how difficult it can often be for a doctor faced with unusual, vague and nonsensical symptoms! However, I also feel sympathy for any patient online patient looking for answers.
On a recent online symptom check for lower left abdominal spasms, I discovered I was pregnant with an alien baby! (Ronny Allan)
The internet is really powerful but also really dangerous. For example, if you look up “best treatment for cancer”, you have an astonishing 300 million offerings. Right there with rigorous, evidence-based sites, there are those offering fermented foods and DIY cancer cure kits (e.g. fake healthcare news and cancer myths). Worried patients sometimes need help to distinguish between sensible advice and fanciful claims/ miracle cures. In a study published in 2019, according to the American Society of Clinical Oncology (ASCO)’s second annual National Cancer Opinion Survey, a surprising 40% of Americans believe cancer can be cured solely through alternative therapies (higher in younger patients). In a similar study in UK, the NHS blamed social media for the spread of fake healthcare news. Unfortunately, social media ‘misinformation’ includes ‘alleged’ cures for various ailments including cancer. I think we’ve all been there, we check twitter, Facebook, Pinterest etc and we find the ubiquitous miracle cures for every illness under the sun. Easy to find, easy to read and worryingly, easy to share. Surely these cures must be true, after all…..it’s on the ‘NET’. Read more about the sort of things to look for – click here.
When I combine my own experience with what I read on patient groups and forums, I can see that internet searching is not for the faint of heart. Some people are already in a state of anxiety before they started searching Dr Google’s archives, and what they find has probably made their anxiety worse. In fact, the rise of the internet has created a new term for those who worry themselves sick and continually misdiagnose symptoms on the internet – ‘Cyberchondriac’.
Even when we know ‘googling’ our symptoms won’t end well, we don’t seem to care, we just need answers! Searching authoritative sites is therefore really important and the availability of proper medical information online is actually putting more power in the hands of patients. It’s how we as patients exploit it that is really important. Just as you can find examples of ‘cyberchondria’ online, you can also find examples of patient power in a doctor’s office. Worryingly, you can also find examples of ‘Dr Google’ being right after being dismissed by real doctors, sometimes resulting in patient illness or even death.
The medical community need to accept that searching for more information is a natural patient instinct, not a slight against one’s doctor. The profession will have to get better at educating the next generation of doctors now that Dr Google is here to stay (ditto on Dr Bing) and, I think, to help. And some patients come on my group very well researched (thanks to the internet) and I know many have been helped for when they meet their own specialists.
That said, I don’t believe the internet will ever replace the profound human dimension of the doctor-patient relationship, even with AI. And of course, not everyone is happy about “Medical Googlers“. Slightly tongue in cheek inclusion but it does present a view from the other side of the desk.
Tips for online searching:
1. If you are not experienced with search engines, don’t actually use them if you can help it. Narrow it down by going to a reputable site and then search that. For example, try RonnyAllan.NET which in turn has its own search field within the site. I would say that ….. but see my references and plaudits!
2. Try to be specific as vague search terms will result in frightening answers, and in practice any symptom can be read as a sign for nearly every single horrible illness, or a worsening or recurrence of an existing condition.
3. When you think you’ve found something good, make sure you check two main things:
a. Dates. Some stuff on the internet is really old. While some of it may still be current, much will be out of date. If in doubt widen your search.
b. Site owner. More than half of cancer information is from disreputable sites who want to see you stuff. Stay away from sites such as “I_will_sell_you_dangerous_stuff dot com”. (there’s no such site but you get my drift).
4. If you have more worrying symptoms, or if your symptoms are changing or progressing, then go ‘offline’ i.e. visit your GP or primary care facility. If you’re sure of your facts, be assertive until you’re convinced otherwise. However, accept that the internet may be wrong when you seek medical help. Minor symptoms often resolve themselves in time.
5. If you’re someone with an already diagnosed serious illness, the worry that goes with that is quite understandable – check out my 8 tips article. However, the same tips apply although you may now have established your own specific sources of advice in addition the general health areas.
6. Charities and associations for specific conditions are also a good information source but just note they may not have the best or up to date simply because they have been granted a ‘charity’ or equivalent status. I’ve seen some complete rubbish on many of those sites.
7. Patient forums can be ‘frighteningly good’ but they can also be ‘good at frightening‘. Personally, I try not to compare myself to strangers on the internet. However, due to my poor experience in patient groups, I set up my own group designed to help not hinder emphasising the heterogeneity of NETs dispelling some of the myths that patrol badly moderated forums. You can join my group below.
OK, the graphic below is not designed for experienced ‘surfers’ but for those who are very anxious, it’s a reality. The internet will very quickly dig you into a hole of despair. Join my group and be guided by others who have already been in that hole and know how to get out of it.
Be careful out there it’s dangerous. I have a private group for patients and caregivers where I like to ‘keep it real’. Check it out here.
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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