Hi,
My name is Karen and I am a Resources Editor at Parkinson's UK. I am doing some research for an article that will be in the next edition of the Parkinson about using the internet to look for Parkinson's and health-related information.
Have you used the internet to look for health or Parkinson's-related information? How do you decide that what you are looking is reliable information?
Thanks for considering!
Hi Karen
I've been trying to think about what I actually do. For someone who prides themselves on having a bit of rigour, I suspect that shamefully I am quite random and prejudiced.
I’ll probably steer clear of sites fronted by a man (it’s always a man) in a white coat, especially if improbably handsome, and double-especially if the brand is eponymous. Press releases are often a turn-off, too.
And anything that offers “cures,” suggests potency for all manner of ills, goes against current medical thinking (this last is a real worry to me: what great breakthrough am I missing?), and anything else that reads “wacky” (that’s quite a list for me: so boring I remember the 60s).
I’ll probably be more impressed by sober-suited sites from NHS (though these can be Noddy level) or NICE, linked to by PUK (you gotta trust someone), big pharma (with the obvious drawback that they’re, er, big pharma), peer reviewed papers (with the obvious drawback that I don’t understand them).
What do I want? Something in the middle. I have a science degree, but know no biology. I need simplified, but not simple, texts on what’s going on with me. Why? So’s I can manage my own condition more effectively (and be able to converse more intelligently with Turnip).
Best wishes
Semele
that would be nice (just joking!!!) Agree very much with Semele.
i must admit to always looking up the original publication that newspaper articles are based on - the journalists often exaggerate the scientist's results. I am always very suspicious of results based on population statistics rather than experiments. There have also been cases of scientific fraud (Queensland), selective use of results and dodgy pd simulations. And this is at the sober end of the internet,
Hi Semele
i am aghast that you put your trust in "Big Pharma"
I have just finished reading the book " Big Pharma" written by Ben Goldacre , a doctor, in 2012.
It is a very detailed critique of the ways in which these companies bury trial data,mislead doctors with deliberately flawed research , while regulators stand by. Many patients die or are harmed in this greed-driven process.
Just a few quotes for you...the book gives a much more detailed account of the industries corruption and amoral attitudes...
"in July 2012, GSK received a €3 billion fine for civil and criminal fraud, after pleading guilty to a vast range of charges around unlawful promotion of prescription drugs and failure to report safety data...(A drop in the ocean to them....they made €7.6 billion last year alone)
GSK bribed doctors....paid doctors millions of dollars to attend meetings....used sham advisory boards...
It withheld data on the antidepressant paroxetine ....gave kickbacks for the drug Lamictil, ....made false and misleading claims about the safety profile of its diabetes drug rosiglitazone... " etc...
Newspaper article praising their drugs were written by UK GPs who were also working as PR consultants for the drug companies.
In the US whistleblowers get a cut of any fines levied. In the UK, whistleblowers are sacked and silenced.
Just one more fact.
Richard Sykes was the head of GlaxoWellcome from 1995 to 2000 and then chair of GSK from 2000 to 2002 ,when many fraudulent acts took place.
He is now the chair of Imperial College Healthcare NHS Trust and chair of the Royal Institution in London, the UKs oldest and most eminent science communication establishment.
Still trust them?
GG
Reading my above post, I realise it icould be seen as negative.
I would like to add that Goldacre's book includes many concrete suggestions about what needs to be changed to allow medicines to be developed and marketed in a fair and honest way.
The profits will be less, but patients will benefit enormously.
Patients' groups such as PDUK could begin by refusing any funding from Big Pharma.
GG
Hi GG
I've been reading Goldacre's work for a good few years now. That's why I wrote about the dilemma of trusting big pharma. But we're kindof stuck with them, because that's where our drugs come from and it's our drugs that better our condition. As I say, there's precious little else to trust.
Agree that Goldacre makes positive suggestions for better trialling of drugs, more rigorous analysis of data, and less hyperbole of results (and I'm sure you meant to write "alleged" fraudulent acts).
And I'm sure patients' groups such as PUK are fastidious about funding only good research, whoever undertakes it (you gotta trust someone . . . ), and I'd say that that was more important than the receiving of funding. (but, actually, there's a point there. Research - what are your policies about who you receive money from and for what? I notice GSK, eg, among the funders' list for y/e 2012)
Yours, living in an imperfect world
Semele
Hi Semele
I am pleased to see that you are familiar with the efforts Goldacre is making to challenge the widespread and systemic problems in medicine.
It was not an accident in omitting the word "alleged" as GSK pleaded guilty to many of the fraudulent acts with which they were charged.
Hence the €3billion fine.
In July 2013 leading Pharma companies were urged to mobilise patient groups to challenge changes in the law that would ensure all trial results were available for scrutiny.
Many patient groups such as the AIDS charities and the Cancer Patients Coilition, were horrified and issued statements calling for transparency in all trial results.
It would be interesting to know it the PDUK has issued or will issue such a statement.
GG
Indeed, the All Trials campaign is central to solid research and something Goldacre has long championed (PUK has signed up to this)
S
Hi Karen,
It's a bit of a poser. As someone who has recently been diagnosed with PD (December last year) and very much a liker of the internet, I wanted to do some of my own research and came to this site first as I tend to put more faith in fellow sufferers experiences as they are going through similar experiences. I try not to go to the drug company sites as they all seem to be in it for the money. I have mixed reactions to sites like NHS but am on the whole a believer in what I read, especially if it is backed up by another site or user experience.
Cheers
Thanks Hikoi, yes we are big supporters of the All Trials Campaign and we're keen to see that all clinical trials are registered and the results are fully reported.
We discussed this on our website last year:
http://www.parkinsons.org.uk/news/21-february-2013/why-all-clinical-trial-results-must-be-published
Parkinson's UK receives a small amount of funding from Pharmaceutical companies, but crucially these funds never go towards our research work.
All the research we fund is made possible by voluntary donations and we employ a very rigorous, independent and transparent funding process to ensure that every penny works towards improving life and finding a cure for Parkinson's.
Find out more about this here:
http://www.parkinsons.org.uk/content/research-funding-process
Best wishes
Claire
Parkinson's UK research team
Hey everyone,
Thanks so much for responding to my post - you've all raised some interesting points here.
Thanks Claire, it's good to have your reassurance on the ethical quality of your work. as i said earlier, i gotta trust someone!
Best
Semele
Hi all
I hope Karen S does see these posts as relevant to this thread, even though they go beyond the initial issue of internet-based info.
GG makes some important points about the difficulty of trust, and where to find it. There has to be a bit of faith, too, I think, and i have to put my faith in PUK; if not you, who? So how can/does PUK demonstrate that they're steering the right course?
Yours, getting more troubled in my imperfect world,
Semele
I hope Karen sees the relevance of these points.
Much of the communication we have with PUK is via the Internet.
They provide much positive support and information and this is invaluable.
I want them to prosper and continue being the complex organisation helping so many in so many different ways.
Via the forum and helpline and numerous articles, I have managed to support my husband through dreadful times and find the right help for us both.
But, I cannot accept that it is in our interests that they accept funding from those with a vested interest in no cure being found, and continued use of their drugs.
They kept their knowledge of the terrible side effects of DAs from us and stood by as lives were ruined.
All in the name of profit
if as PUK insist, the Big Pharma funding is only a tiny part of their income, let it go and take funding only from those who genuinely seek a cure and the best way of combatting the symptoms, not the most profitable.
GG
Turnip, does this thread answer your question about the long wait for trials of the electrical stimulation?
Drug companies pay for research....if there is likely to be a profit.
Patients' advisory groups ( eg PUK) pay for research, but receive funding from the drug companies and need to keep them onside.
A cure to both of them means a curtailment of huge salaries/ jobs / income stream.
PUK needs to break free from the vested interests of the Pharma industries for a start.
There is no altruism...their interests will always come before ours but there is much that can be done to rebalance the situation.
GG
Dear GG
i hope your level of cynicism exceeds reality but unfortunately, from experience, one probably should be sceptical about that.
for example PUK makes much more of PUK funded research than non-PUK funded research. But that is to be expected - PUK is a business and its duty is to sell its products ie successful research.which earns income from donors and governments.We benefit from every penny they squeeze from either. With Big Pharma, PUK is playing poker with the devil. If the don't play they can't win and we lose substantial income, but if they lose their soul is at stake and our future. Should they play? May the odds be forever in their favour. Lets hope they have a parky poker face.
I agree with the comments of semele, particularly the comment I need simplified not simple texts. I used to use PUK resources quite alot but i choose which now, some are just too simple or too cautious they do not give enough concrete information.
I am wary of many US sites as their approach to health care is quite different. Like Turnip I look for source documents rather than reporter hype. Claims with no references I ignore and often I will search on names to check the credibility of some sites, particularly the miracle sites. Quackwatch is quite useful.
I use google scholar search for PD research but even that presents problems as you can always find some research to support every point of view. Then there is the problems GG raises about results not being published.
Bring back encylopedia britannica, life was so much simpler.
