to think that professionals feel undermined by people using the Internet to find answers?

[LapsedTwentysomething]

I've spent a lot of time online recently, researching treatments for a specific cancer (not mine). Post-diagnosis I'm able to use the information I have on type, grade, stage and mets to scope out the next stage of treatment. In fact, we were aware well before the consultant realised (at the prescription writing stage) that the next phase of treatment wasn't going to be available geographically. I know for a fact that it is now available but having chased the professionals on this for the last six weeks, not even the consultant is aware of this.

Other HCPs tell me that I need to be aware that all cancers vary at cellular level and this particular treatment may not be appropriate, whereas I'm well aware that it is - having been recommended the treatment by the consultant.

I feel that HCPs in particular have a tendency to roll their eyes at what they see as armchair medics hysterically Googling their symptoms. In another instance though I took some legal advice and was simply provided with information I'd already found for myself.

AIBU to think that some professionals need to recognise that the general public is savvy enough to judge for themselves the reliability of information they find online - a skill taught from an early age now - and need to stop patronising those of us who do so by dismissing or eye rolling when presented with info that they themselves were not already aware of?

I'm not in any way suggesting that we should all be self-diagnosing or representing, but that actually the Internet is a priceless tool in disseminating information for everyone.

YABU - I think that most people aren't savvy enough to judge what they're reading online. It never fails to surprise me how many people will "research" scientific ideas without any understanding of why peer-reviewed research is more credible than other research.

YANBU. People think you don't need libraries anymore because "everything is on the internet". Well it isn't, and what is there isn't necessarily accurate. Librarians can filter that information and also know where to look.

There is an enormous amount of information on the internet but it is not alway interpreted correctly (sometimes it is of course) and often there will be other factors which the researcher hasn't taken into account.

Just this week I have had a lay person try to argue a tax law point with me and send me the link to a very basic website which talked in very general terms about the point. The way it was put was "you are wrong, here is the answer."

The fact was that whilst the information on the website was correct in very basic terms it did not apply to the situation we were dealing with for various complex reasons.

I didn't feel undermined in any way but it actually created further work in that particular situation because I had to explain not only the law but also why their assumptions were incorrect.

In any event, as others have said, you simply can't assume that a client has done any research and so you have to tell them the law even if its basic information which they probably could have goggled themselves.

Law is an interesting field in this respect and the internet and the availability of the information is one reason the profession is changing so much. Anyone can read the statutes (in fact they always could but people were less inclined to do so when they had to flick through thousands of pages of paper in a law library) but interpreting how the law applies to a particular situation is where the skill lies. This is one of the reasons why low level/junior lawyers are less in demand than they used to be and the value is all in the very senior lawyers (supported by very junior paralegals). Law is becoming a top and bottom profession with not as great a need for those mid level lawyers.

In my particular field (employment law) there are lots of unqualified people out there giving "advice" (and lots of very out of date websites - not particularly surprising given how frequently employment law changes).

I don't feel undermined by it but 99% of the time they have interpreted their info wrong or not checked the source etc. a little bit of knowledge can be a dangerous thing.

Some can absolutely do their own reliable research, but more often than not they go in with a selection bias whereby they filter out the info that doesn't support their desired outcome or what they want the facts to be.

Look at he "freeman of the land" movement to see the kind of bollocks that can result from personal research.

Very true, a little knowledge is a dangerous thing.

Have you never looked on the pregnancy and health boards on here and saw a 'I googled and this and this came up and now I'm freaking out' type posts?

I'm a hcp and I would guess that the majority of people do not know how to disseminate information. Anyone can make something up and stick it on the internet as 'fact'. By googling a few symptoms you can convince yourself you're dying.

I'm not saying you should believe every word a hcp says, far from it. But self diagnosing from Google can also be dangerous.

for you OP. Cancer, the treatments, politics and emotions that go with it is such a crap situation to find yourself in.

I'm a nurse and I often self diagnose with the help of the Internet. I've yet to be wrong. When I visit the GP, I tell them what's wrong with me and ask for the treatment that I need. I'm polite and cheerful and just want to be in and out.

They then mutter the immortal words "What job do you do?"

Bollocks. Most people google and cant differentiate between medical info and utter rubbish. You only have to look at this site, people recommending homeopathy and reiki for serious illnesses, the antivaxxers quoting bogus conspiracy theories, the honey can cure cancer idiots, the pregnancy myth spreaders.....most people dont have the critical thinking skills to assess the information they find to sort the crap from the sensible, nor tne education to understand the true info when they find it.

People think half an hour on the internet qualifies them to have an equally weighted opinion to a medical professional with years of training and immense experience. They arent undermined, they are sick to death of people who think they know a lot more than they do.
Yes, the internet is a good tool to disseminate information. But the internet also disseminates a lot of untruth, misunderstood half truth, lies, paranoid theories, uneducated opinion, ridiculousness and homeopathy.

My DH had back pain he googled it and decided he'd pulled a muscle. I kept nagging him to see the GP or a physio, he wouldn't till it was so bad he couldn't walk properly. Eventually he went to GP, had a scan, saw a physio. He'd slipped 2 discs in his back.

People go to university for a LONG TIME and then spend years practising their skills. I would prefer to seek their advice every time. Google may help reassure me that something is normal (although, it would probably throw up all the very rare, dangerous things with similar symptoms)

The industry work in (not medical) is often plagued by clients to whom I would apply the phrase 'a little knowledge is a dangerous thing'. I can only imagine how much more dangerous that can be in the medical field.

This is a big issue at the moment in the NHS and it's been a topic of discussion in quite a few meetings and talks I've been in.

The thing is and I don't mean this to sound patronising, the vast majoroty of the people doing this think they're becoming informed, but aren't. There's so much more to health and illness than googling a symptom or procedure and thinking you know all about it.

I love it when a patient wants to discuss things they've read online, but what I won't tolerate is them telling me to do my job based on something they've read that could be from any source, any country...

And no sadly the general public isn't savvy enough. I still see students (adults) using newspaper articles as sources in their essays. I have patients giving me print offs from blogs they've found.

I have been in the situation where hcps have got it badly wrong so I always read up on things and if I don't agree with an hcp I will say so (politely). I have found some hcps to be patronising and dismissive and it has eventually turned out that I was right. I think patients and hcps need to listen to each other.

I'm not talking about googling symptoms and self diagnosis. I'm referring to the post diagnosis research of your condition and the mainstream treatments available.

I know what the treatment is. We have the treatment concerned but we have had to access it in an indirect way via a house move and the CDF.

My issue is that I know that the guidance changed in February 2015 but that several months on, no HCP that we have spoken to is aware of the new guidance.

I repeat, we are not self diagnosing and not trying to extrapolate from complex research that we don't understand.

We know the treatment is appropriate. We currently have it. We would like to get it in a direct way which would help us to get around some really awful implications of having to move. But no-one wants to listen to me when I tell them that the new guidance is there for all to see via NICE. I'm too stupid to understand that the drug may not be appropriate in this particular case you see. Really?!! Well the Oncologist and CDF have also got it wrong then.

I don't think it is an issue of undermined so much as the veracity of information, accuracy of the source, and in the unfortunate majority of some cases, the patient's inability to grasp how/why the diagnosis or treatment isn't appropriate due to other external or internal factors.

I research, because my DD's condition is exceptionally rare. She is the only child in Canada with her combination so when a doc comes to us with an idea, I want a chance to think it over and discuss it. However, I have family members and friends who try their best to help but get frustrated when I try to explain why the isolated research they have done can't provide the "magic bullet" to fix DD and guarantee that she will live into adulthood.

As others have said, yes and no, it depends on the sources and that you haven't just cherry picked some information from a "quote of a quote" of a study.

I have heard it said the GP's cant be expected to stay on top of the latest research for all conditions and sometimes it can be helpful to do a bit of research.

Lapsed we have faced the same challenge. I don't know if it will help you, but is there a professional you could reach out to in order to have them discuss the treatment with your health care team?

While we have no treatment protocols for DD's main condition, the subsets of system issues do have treatments in some cases. When we've had challenges accessing treatment, we have contacted professionals at a distance and in most cases they are receptive.

I google everything, and then ask HCP not tell HCP based on the information I have found, without using the words "I have googled..."

This approach appears to work well.

After any meeting I am usually asked what my medical background is, or what my position is in a genuine friendly manner.

None whatsoever is the answer.

Lapsed
What you are talking in your later posts about is different to people researching an illness (although you have done that). Your discussions with the professionals are around the guidelines about the geographic availability of a treatment option that has already been identified as appropriate. That is more about NHS admin than diagnosis. That is reasonable. It is perfectly reasonable to say to someone, the consultant has recommended treatment X, the guidelines say treatment X is available here, why aren't we receiving the treatment here?

That is a long way from someone who has googled and convinced themself that their mild chest infection is pnuemonic plague bronchitis.

I am a lawyer and I leave bits of law like conveyancing and will writing to experts because even though I could google and work out how to do it, I'd much prefer to rely on an expert who does the work day in day out.

I don't agree with your sweeping generalisation. I'm constantly amazed by the things people will believe because they've read it on the Internet, particularly during the Scottish referendum.

DH is terrible for going to the doctor with imagined illnesses from googling his symptoms.

However I have been in the situation where my GP was unable to diagnose DS's issues when he was a baby. I suggested food allergies based on the research I had done online and he said it couldn't possibly be that as cow's milk proteins couldn't pass through breastmilk. I was right, he was wrong and very arrogant about it. He was humble enough to apologise and do some reading up on after the tests came back positive for CMPA.

I also have been asked if I was a healthcare professional when DS was in hospital with asthma by the consultant as I clearly knew what I was talking about.

From what my doctor/nurse friends tell me though the vast majority of people who come in having self diagnosed/researched through google are wrong.

CallMe, I'm truly sorry to read you're having similar issues with your DD's treatment. In fact a friend recently suggested the trusts's CHC, which I hadn't come across. I have heard back from them this morning and they will be a great support.

Itcouldbeyou, that will be my approach in future

I think it depends - could be either way. As PP have said, some people will believe anything they read, and not understand the complexity of things. Eg. people are always coming up with 'helpful' suggestions/miracle cures for my depression/anxiety. And then they act like I'm stupid or can't be bothered because I don't follow their advice, because I know years' of traumatic experiences etc. unfortunately can't be cured overnight, and I am doing the right things to recover.

OTOH there seems to be some extreme arrogance in the medical profession, plus if they want you to understand why they're right, why not explain? I had the joy of gynaecological issues (endometriosis) and all the fobbing of and misinformation that comes with that! I actually ended up googling because of this.

I noticed once I'd had to raise it with PALS and was pushing a bit for answers, that they spoke to me as if assuming I'd looked stuff up - they kept saying things like "If it was endometriosis then X would be different" without explaining what endo was, or what made them think of that particular diagnosis! Of course, the reason they knew I'd suspect endo if I'd gone looking was because I had all the symptoms! And endo, in fact.

Got told some corkers though - "Painful periods is a sign of fertility, so that's good!", "The Mirena coil doesn't contain hormones", "It's normal to have painful periods" (pain that makes you vomit!) - and then just fobbed off when I asked why my first 15 years of periods were pain-free.

The lovely gynae who I finally spoke to after going through PALS was the complete opposite - explained everything, went through the pros and cons of treatments, briefly and simply (ie. this is not a time issue, just delivery/attitude issue.)

So YABU to assume all professionals are like that, but YANBU to have noticed it in some of them!

What hiddenhome and itcouldbeyou said.

YABU. MN is a great example, any time someone has toothache the default diagnosis is an abscess and the treatment is antibiotics. Complete bollocks, my OOH clinic would be far easier if I wrote scripts all day.
People are very bad at separating actual data from anecdata.

Not ready full thread but I have to say thank you to google as if I didn't google when I did for ds he wouldn't be alive right now. Gp kept fobbing us off

Not all of the general public is. Some people are, but an awful lot will go onto blogs full of nonsense and insist it is scientific fact. But some people can. And everybody is entitled to have their questions answered by HCP even if they are prompted by the net.

It's not just post-net anyway. I remember reading about PCOS in Just 17 in the 90s, taking it to the doctor and saying 'I have this' and being told to sod off because they knew better. Ditto a couple of times in my 20s when I researched it on the net. And what was I diagnosed with after infertility treatment at the age of 31? You've guessed it, PCOS.

I do think it's a valuable tool against misdiagnosis .