Fair Use - what are the rules for sending on articles you find on the net to your health professional?

[Persevere99]

Hi

I’m seeing my asthma nurse in 3 weeks time about a topic I would appreciate her thoughts on.

I would like to copy and paste and send her a paragraph each from 5 articles regarding the topic I’ve found on the net before the appt.

I will acknowledge the authors and publishers and say ‘this is for your information only’

I note some web content is Free Access, but others I’m not sure.

My nephew says you can copy and paste and send on to someone else anything you find in the net, as long as you acknowledge the author and publisher. And, it is not for commercial use.

What are your thoughts on this please?

Thanks

Persevere

[Bevvy]

Your nephew is correct. So long as you acknowledge where the information came from there is no issue using it.

[Persevere99 in reply to Bevvy]

Thanks Bevvy that’s very helpful.

Persevere

[Africanleopard Verified User]

hi Persevere99

As long as you properly acknowledge the source that’s fine. Though, if this is medical information, I suggest try and establish the quality of the source material. If it’s about asthma - information from peer reviewed journals or guideline documents is usually high quality.

I’m curious to know what sort of information you’d like to send and what is it you are trying to inform the health professional about?

[Persevere99 in reply to Africanleopard]

Hi

Thanks for replying

Yes, I’m asthmatic since a teenager, 53 now

On seretide, peak flow now 600, down from my 680 max in my 20’s

I used Chesteze do-do till they stopped selling it in the UK about 10 years ago

I used it only on a race day and it really did open my chest up while running.

The active ingredient is ephedrine.

So, I’ve been gathering articles on the net about ephedrine helping asthmatics and will ask my asthma nurse if I can have a trial on it

Thanks

Persevere

[Africanleopard Verified User in reply to Persevere99]

Hi again. Unfortunately ephedrine spray inhalers were associated with quite serious side effects. That’s why salbutamol and terbutyline ( ventolin and Bricanyl) were developed as safe alternatives to the ephedrine sprays.

Hope this is useful information.

[CallysMum]

I have just done the same. They should be pleased someone is using their own shoe leather and time to bring articles to their attention. Just one thing, try to bring papers from better journals, than from some out of the way place. It's not that the out of the way place mecessarily does poorer science, it's just harder to poohpooh a paper from The Lancet, or thr BMJ.

[Persevere99 in reply to CallysMum]

Thanks CallysMum

Yes, it’s to save the asthma nurse’s time, wading through the net herself

The topic I hope to discuss is ephedrine. Please see my reply to Africanleopad for more

From my own experience, magazine and news articles are more reliable than peer reviewed studies

The reason is this, the peer reviewers have just the one objective, that of passing on what they collectively ‘think’ is right

Whereas, magazine and news articles are written from first hand experience of something helping them, or not

Thanks

Persevere

[Lysistrata Administrator Community Ambassador in reply to Persevere99]

But even if they feel something helped them, it doesn't mean it will help you or even be safe for you to use. You're not the same person, with the same medical history or the same other medications - and with asthma, the same triggers.

Of course you have said you'll be asking your doctor/nurse which is good, but the sources matter too, as others have said. It's not massively helpful to a healthcare professional deciding whether a treatment is right for you if they have no rigorous medical evidence to look at about whether it helps people like you more often than not, and if it is likely to be safe for you.

If it's an article in a magazine, you don't always necessarily know even if it actually*did* help their condition, or they just felt better for taking something. This is why most treatments are tested against placebo and blinded, so you don't know if you received the placebo or not.

I actually do think (along with many actual scientists who are involved in clinical research and doctors who make use of that research) that clinical trials can have a problem with too much careful selection of patients. The trial population may not always reflect the real world population with that condition.

It's also true that not everyone in a clinical trial will be helped by the treatment being tested, and you also need to define the scientific question you want answered and design the trial properly to answer it. And the peer review system isn't perfect, though it's also not really about a collective opinion - they can have very different ideas from each other! Which the researchers can choose to include or not and the editor of the journal can decide whether or not it gets published, and if the researchers are justified in not taking in a peer review comment.

I'm not going to pretend the current approach with clinical trials and publications is a perfect system that always works perfectly and no one ever gets it wrong, or that no improvement is possible. I personally would love to see some changes in academic publishing and how trials are done (again along with plenty of people who are experienced medical researchers/doctors, which I am not. I work in a related field and have my perspective as a patient too mixed in with my experience). But this isn't the place for me to rant about it, and I definitely don't think we should get rid of the whole concept of peer review or clinical trials, nor do others who criticise some aspects of how the system works.

However, I still don't think that going instead on what helped some other person who wrote an article is necessarily the way to address problems with clinical trials. Or that it's better than looking at the results of clinical trials when they are done properly and evaluated rigorously for safety and efficacy (and more and more now for real world 'effectiveness' in a broader range of people).

And all this does need to have been done to get a treatment approved. There is no requirement for that for someone writing an article about how X helped them.

[Persevere99 in reply to Lysistrata]

Thanks lysistrata for your in depth explanation.

The thing about clinical trials, is that they wheel out Nocebo, Drucebo, Placebo, Number needed to treat, N of 1, N+1 et al, to ‘prove’ the point that the study was set up for and that in itself is false.

Nocebo especially, as you are aware, can be used to naysay anyone complaining about a side effect of any medication.

Far better, for me, to read an actual person saying X did or didn’t help them.

Thanks

Persevere