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

(77 Posts)
LapsedTwentysomething Fri 17-Jul-15 09:46:54

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.

DonkeyOaty Fri 17-Jul-15 09:52:27

You are right to say some do.

Ofc some don't, and welcome patients taking a greater stake in their care (in fact in my own, non-medical opinion, patients are being encouraged to do so nowadays)

AnyoneForTennis Fri 17-Jul-15 09:55:29

yabu

9/10 the information has been read wrongly or doesn't apply to the situation for one reason or another. I'm not a HCP,but work in a specific area,and the misinformed people out there (who think they know the answer cos they googled it) astounds me

LapsedTwentysomething Fri 17-Jul-15 09:56:10

I agree that we should all be taking responsibility for our general health, but I haven't come across this attitude at a more specialist level.

TiggieBoo Fri 17-Jul-15 09:56:29

Part of the general public is savvy enough to filter information, but I think you underestimate the number of gullible people who would believe anything they read. Proof in case, the success of Forever Living, not to mention the myriad of miracle diet pills, amazing skin care, and so on. Lots of people haven't got any common sense at all to discern what's valid from what's fake.

LapsedTwentysomething Fri 17-Jul-15 09:58:49

Yours is exactly the kind of response I'm referring to, Anyone. I know exactly what drug is needed, and yes it is the one that the oncologist has gone on to prescribe, overlooking lack of availability in our area.

0x530x610x750x630x79 Fri 17-Jul-15 09:59:30

My mum believes everything she is told or reads. Even her own mum made jokes about it.

Trills Fri 17-Jul-15 10:00:23

the general public is savvy enough to judge for themselves the reliability of information they find online

I don't think this is true.

A well-informed and discerning patient using the internet to better understand their condition might be a joy to an HCP, who can then talk to them in more detail and not need to explain simple terms.

BUT you can't be sure that someone is well-informed and discerning, so it's your job to make sure to explain the simple things anyway, so the well-informed patient goes away feeling patronised.

I already knew that, why were they telling me all this low-level stuff? you think. Because they can't be SURE that you know it unless they tell you.

A badly-informed non-savvy patient using the internet to self-diagnose or to demand "treatments" that may be nothing of the sort, will at best waste an HCP's time, and at worst ignore professional advice in favour of advice from whatdoctorsdonttellyouaboutcancer.com

LapsedTwentysomething Fri 17-Jul-15 10:00:53

But I'm talking about treatment for a specific condition after its diagnosis. It's perfectly possible to keep informed via NICE, NHS, Macmillan and Cancer Research.

LaLaLaaaa Fri 17-Jul-15 10:02:07

Yes and no.

I agree that it is a fantastic tool for helping people to become more informed, so long as they can recognise good information from bad. I was frustrated ttc for long time and, after tracking my cycles and reading articles online, discovered my luteal phase was short. In the meantime I was going through nhs testing for fertility. I started taking b complex after reading a number of articles online suggesting this as a solution for increasing luteal phase. I'm a scientist myself (biologist) so made sure the papers I read were reputable.

I mentioned it to my fertility consultant who said she had never heard of taking b complex to increase luteal phase and didn't think it would work.

The month after I started taking it I got pregnant with luteal phase of 2 extra days. Fertility specialist was a bit sniffy with me when I told her and said it must be coincidence but I've since spoken to many people who've done the same.

HOWEVER I think there is a general habit of the public googling and using bad advice from the net to self diagnose or follow for an issue, simply because they don't know difference between good reputable advice and bad. This is risky and frustrating for experts.

My job involves advising the public on conservation and wildlife. The amount of people who dont listen, or think they know better, because they read it on google is staggering. I have to constantly point out that the information I'm providing is both current and published in scientific journals. They all just want a quick fix though so if I suggest something that isn't instant they are not inclined to follow my advice, even though I'm highly qualified in my area.

So I can see both sides.

GiddyOnZackHunt Fri 17-Jul-15 10:02:22

Some members of the public may be able to research things sensibly. Others not so much. The second group possibly forms the majority particularly if they're emotionally involved. I think professionals probably spend a lot of time listening to wild theories from the second group which means their heart sinks every time someone says "I googled this and ..."
The popularity of homeopathy doesn't do much to demonstrate critical thinking.

aurynne Fri 17-Jul-15 10:02:32

"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"

YABVU. The great majority of people are absolutely useless in interpreting evidence-based information found in the internet and judging the reliability of websites. The main problem is, most of the reliable information is written in a language most people find too hard to follow, so they normally end up with "easier to read" websites written with people with no qualifications, no idea of what they are saying, or with specific interests. Most people do not know how to contrast sources of information, find peer-reviewed research or even read a scientific journal, let alone telling their own oncologist the best way to treat their own cancer.

HippyChickMama Fri 17-Jul-15 10:05:42

That may be true Lapsed but not everyone is aware of the difference between reliable sources of information online and those that are not so. I am a HCP and it's amazing what some people believe because they read it online.

NewFlipFlops Fri 17-Jul-15 10:07:52

Good professionals don't feel undermined and take the opportunity to have the discussion at a more honest, informed level, IME.

YANBU though, I take it as a bad sign if the professional shows signs of being undermined.

0x530x610x750x630x79 Fri 17-Jul-15 10:08:22

Personal example, i was pregnant went to doc to say i had got myself panicked about x problem.
Doc pointed out main symptom was giving birth early, i was already late, i am normally quite savvy and v.good at researching stuff for other people

Sirzy Fri 17-Jul-15 10:09:25

It is one thing reading up, knowing about possible options and way forward. It's another thinking that makes you an expert and someone who knows better than the medical professionals.

Not all treatments will be suitable for all people in all situations.

mrsmalcolmreynolds Fri 17-Jul-15 10:11:26

OP you are extrapolating from your own experience to make a very sweeping assertion and whenever anyone challenges that general assertion you use your own particular example as evidence!

It does sound as if your HCPs should have listened to your input better but that's not a basis for proving your general point.

As for your swipe at legal advice (a) it sounds as if what you were advised was correct and (b) if you were so confident in your own findings why did you bother paying a professional at all? Not sure what you're getting at there.

Grandshiredoubles Fri 17-Jul-15 10:14:49

My husband has testicular cancer. The biopsy results were read out to us over the phone on a Friday by a doctor as thr consultant was away, we spent the weekend researching. Discovered it was a rare form and on the advice of a forum contacted Dr Einhorn in America who was the guy who
Developed the treatment of TC

He insisted that husband had to get on the chemo ASAP and not in over a weeks time and said the chemo combination wasn't correct. Thankfully they listened and he got admitted and is on the recommended course of chemo.

I am convinced that without this info his chances would be much less.

Dr Einhorn is amazing and takes a real interest in unusual cases and we have had replies to emails within minutes.

Preciousbane Fri 17-Jul-15 10:15:08

Message withdrawn at poster's request.

OhEmGeee Fri 17-Jul-15 10:16:06

What aurynne said, in a nutshell.

Yabu. You can interprete anything from google. It's having the ability to differentiate between the crap and the real and evidenced based.

LapsedTwentysomething Fri 17-Jul-15 10:18:11

I'm not taking a swipe and I didn't pay. It was a favour (well earned, before you comment). I was surprised that it was as simple as that and that I needn't have bothered the lawyer after all.

Seriously, chasing professionals round for six weeks to clarify whether or not they will be implementing new guidance on a drug that a cancer patient has had to procure on their own wit, when it could have been made available on the NHS, is more than frustrating. And then to be sniffed at because you're just joe public and can't possibly understand the guidance is a slap in the face.

hazeyjane Fri 17-Jul-15 10:18:49

It is sometimes the case that a person can be well researched, and know what they are talking about from what they have read on the Internet and their own experience. In my experience most hcp have been very open and receptive to it. I have sat and googled with my gp and ds' paediatrician. And when I had a particular form of cancer years ago, I sat down and told the consultant at our local hospital about the specifics, because he had never dealt with it.

When we saw ds's cardiologist, he had to google ds's syndrome, and said that he would trust us over Dr Google.

However - there are also many many people who Google and come back with 'the answer' and they have got completely the wrong end of the stick.

You can't make such a sweeping assertion!

JanineMelnitzGlasses Fri 17-Jul-15 10:22:09

YABU. The general public is not always aware of drug-interactions or co-morbidity of other illness or life-style factors which cannot be disseminated through internet searches. Nor can the general public possibly know account for variable factors such as their white blood cell count is or how this is being affected by their prescribed treatment.

Medical professionals are not infalible and you are right to discuss all possibilities available. You are wrong to assume that just because you have found a treatment online it is automatically the right course of action to take.

You are also assuming that the general public has a general level of intelligence that allows them to make informed choices. A huge sweeping generalisation OP?

Thurlow Fri 17-Jul-15 10:30:43

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

YABU. For the most part. I'm an information professional librarian and I can tell you now that a) most people have no idea how to judge the reliability of information they have found online and b) these skills are not taught from an early age.

People think Google is amazing. Did you know it indexes something like 1% of all information available from online sources? That it searches an index, not the actual websites? Do most people understand how it ranks the results it finds?

I spend a lot of time teaching professionals this stuff. It's just not taught at school - or at least it wasn't 10-20 years ago.

YANBU that it is perfectly possible for a layman to learn an awful lot and to access some exceptional materials that will help them understand their problem. But most people just don't do that, or aren't able to do that.

Oldsu Fri 17-Jul-15 10:36:52

Totally and utterly agree with looking things up on the internet, a few years ago my DH had terrible mobility problems, only 61 at the time and could only walk using 2 sticks- GP was useless didn't even examine him, it was info from the web that told me it was his statins causing the problem, this info included links from discussion sites both in the UK and US describing the same problem plus articles from GPs and health professionals, took him of statins and within 2 weeks he could walk.

Last year his optician told him he had the beginning of a cataract, but was told that both eyes had to be affected before he could be referred, when it got worse he was refused an NHS sight test as it was under a year since his last one and was told to get a letter from his gp

Went straight on the internet, both the NHS choice and the RNIB sites both said surgery could be done if only one eye was affected, as a type 2 diabetic he would have been entitled to a free nhs sight test no matter when his last one was as he has to have retina scans and they cant be done if he has a cataract, I also found out that out our health authority does not restrict cataract surgery. Armed with all this info went straight to gp to be referred which gp did. DH had a successful op last month the eye surgeon said it was a really bad one.

Sorry I am convinced that if I had not looked things up I would have a crippled half blind DH, instead of an active one who has a job and a full and interesting life

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