Advertising Standards Authority adjudications, sanctions and UK Passport Net

This morning on Radio 4's Moneybox I heard about a website (uk-passport.net) which comes up prominently when people search for anything to do with getting or renewing a UK passport.

The site helps people fill in a passport form and charges them around £40 for doing so, however this money doesn't go towards the cost of getting a passport. In short it's much cheaper just to go to the Post Office or be more careful when searching online and make sure you use the official GOV.UK website.

While the service isn't illegal or anything like that, after all it's perfectly OK to pay someone to help you with something such as getting an accountant to help you manage your finances, the issue with this website - and which led to 14 complaints to the Advertising Standards Authority (ASA) resulting in an adjudication - is that it implied that it was official and people believed it.

The programme spoke to consumers who'd fallen foul of the website and who handed over money that they needn't have, it also spoke to the communications director at the ASA who outlined what could be done to prevent other consumers from being misled.

Skeptic bloggers often blog about the websites or other marketing materials of organisations that have made claims that may be misleading. Part of the reason for this is that it provides an alternative view that (hopefully) people searching for relevant keywords will come across. The intention is to mildly alter the Google landscape a little bit.

The ASA spokesperson was challenged that there didn't seem to be that much that they could do that would actually solve the problem. The ASA does have quite a few options, but it can be a drawn-out process.

They said that they'd asked UK Passport Net to remove the term 'official' and at time of recording this hadn't been done (I checked, it's still there) despite the sanction being published two months ago (see link above). There are a number of companies that dig their heels and in and don't respond to the ASA's requests, to the point that the ASA has a special page of "non-compliant online advertisers" which lists the repeat offenders. People involved in the alternative therapy world are often reluctant to co-operate with the ASA, or Trading Standards, and some have even tried to band together to fight this - arguing that the ASA has no particular mandate to tell them what they can and can't say.

Here's what steps the ASA can and does take - firstly, work with the advertiser to try and resolve the matter. If that doesn't work they can add the advertiser to the non-compliant list. This seems to show up prominently in Google search results (or perhaps it's just on mine). If there's still no joy then they can do several of the following (a) take out an advert themselves flagging up the misbehaviour (b) work with search engines to remove paid-for adverts (c) report the company to Trading Standards.

See more at Online Sanctions.

All of these take time and effort - at the time of writing Google still hasn't removed UK Passport Net's listing but it may well do so soon. If the company removes 'official' from their ad then it can remain.

In the meantime, blogging about stuff in the hope that it might show up in Google's search results is perhaps a decent strategy.

Also, here's the official GOV.UK site to access passport information
https://www.gov.uk/browse/abroad


See also 
These websites discuss concerning behaviour from a cancer clinic in Texas which has recently had its inspection reports published, it really doesn't look very good. So far there appear to have been no legal sanctions but through the blogging efforts of doctors, scientists and skeptics anyone searching for information about the clinic now will most definitely find pages that are critical of the clinic's activities.

FDA Releases Burzynski Clinic Inspection Notes
"The information and its implications, should they hold up, are absolutely damning for the Burzynski Clinic and especially for the lead researcher, Stanislaw Burzynski. Those of us who have been researching this topic have known about these findings for a long time, from almost the moment it could be requested through a Freedom of Information Act request (6 months before it appeared on the FDA website), but we have been careful to not release it through blogs. We wanted to see that it got as high profile a release as possible. Of course, the cat is out of the bag in a big way, and so I want to let you know what these documents say."

Writing About Houston Cancer Quack Dr. Burzynski’s Antineoplastons
"Skeptics can do many things to naturally boost the Google ranking of good information so that it arrives in the hands of people who need it, patients and their families."

Ought we to be writing to the local newspapers that wrote about #Burzynski fundraising efforts

There is recent news on the Burzynski Cancer Clinic based in Texas and it is not good.

Yesterday saw the publication of two documents from the FDA (the US Food & Drug Administration) which reported on an audit of the clinic. They noted that the clinic failed to take proper medical care of the patients and failed to keep appropriate medical records. This is serious because of the harm that can be done to patients when they are taken an unproven cancer treatment but is also worrying from the point of view of 'governance' (ie are the people running the show behaving in a competent way).

"Reports published by the FDA show unrecorded adverse events, failure to obtain proper informed consent, failure to disclose additional costs and systematic destruction of the very patient records that might establish whether the treatment works or not."
Source: WWDDTYDTY blog - Breaking: Burzynski inspection reports

Some of the larger newspapers have written about the clinic, some have reported on fundraising attempts and some have written about the controversial treatment at this clinic. As far as I'm aware a reasonable number of local newspapers have also written stories about families who are trying to raise funds to send family members with inoperable brain tumours to the clinic. My impression (and it might be wrong) is that local newspapers have written more favourably about the clinic.

Generally when doctors, scientists, skeptic bloggers or anyone else has been critical of the clinic's unconventional methods⁽¹⁾ - often in the comments section of favourable newspaper articles - people who've undergone treatment or are thinking of doing so feel threatened. That's understandable, though there can be no criticism of anyone who wants to try everything to save their life or that of someone else, only of the clinic itself.

I wonder if there's a list of all the local newspapers that have reported uncritically about the clinic and if we might write to them with this new information that makes it clear why the clinic's activities are a cause for concern.

The treatment is delivered in liquid form which includes a great deal of salt, raising the level of sodium in the blood (hypernatraemia). This can be fatal though is treatable, however it appears from the information in the FDA's records that there was a failure to treat this effectively, which is harmful.

"You failed to monitor as required by Section 1 6 of your Monitoring Plan. The investigator did not report adverse events (AEs) experienced by study subjects, including 18 cases of hypernatremia."
Source: FDA reports, cited in: WWDDTYDTY blog - Breaking: Burzynski inspection reports

Thanks to @harpistkat and @dianthusmed for comments on Twitter too.

For an uncritical report on Burzynski's methods and other people playing at helping people with cancer you might enjoy this article from the comedy health magazine 'What Doctors Don't Tell You' which Google has cached here: The new soldiers of the cancer war

Sadly that magazine has not exactly covered itself in glory where Burzynski is concerned and has reported his activities uncritically in other articles too. This is an example of the poor information in the magazines that have led both Waitrose and Sainsbury's to stop stocking this title (and to go on record stating that fact) in their stores in the UK, however you can still take out a subscription to the magazine on their website.

Notes
⁽¹⁾ For one, charging patients large sums to participate in what the clinic calls 'clinical trials' (but didn't seem to keep records for) is a fairly unusual situation. In some cases trial participants may actually receive a (usually small) payment for expenses and inconvenience.

#Burzynski - is this normal clinical trial practice?

The year before last I wrote a blog post expressing surprise at how many trials the Burzynski Clinic had running and after recent events (rumours that the Burzynski clinic is under unprecedented scrutiny from the FDA, but note this caveat tweeted by @medtek) I wondered what had changed.

Back in November 2011 I found 61 trials, this year by searching for the name Burzynski it seems there are now 62 (however the last one, this trial, actually relates to a completely different Burzynski so no change in numbers at all, h/t @dianthusmed).

It also appears that there have been more trials but not all of them registered, according to a paragraph on a page from 1998 on Quackwatch's website, highlighted to me by @jonmendel

"Working outside peer review, Burzynski is conducting 71 concurrent, preliminary phase II trials that cover most cancer indications-an unheard of number for a single investigator, and for a drug which is yet to be proven effective for any indication."

What struck me was that the ones I looked at on the first page (of 'unknown' status) all follow the same format of "Antineoplaston therapy in treating X (patients) with Y (type of cancer)" and all on the first page (shown below) are followed by this line (indicating the type of treatment given) appears below all of them: Interventions:     Drug: antineoplaston A10;   Drug: antineoplaston AS2-1

From the first page of results (brown = status unknown for more than two years, red = withdrawn, purple = terminated, green = completed - though is it published and what happened?):

• Antineoplaston Therapy in Treating Patients With Stage IV Adrenal Gland Cancer
• Antineoplaston Therapy in Treating Patients With Residual or Recurrent Anaplastic Astrocytoma
• Antineoplaston Therapy in Treating Patients With Brain Tumors
• Antineoplaston Therapy in Treating Children With Brain Tumors
• Antineoplaston Therapy in Treating Children With Low-Grade Astrocytoma
• Antineoplaston Therapy in Treating Patients With Anaplastic Astrocytoma 
• Antineoplaston Therapy in Treating Patients With Recurrent or Refractory Mixed Gliomas
• Antineoplaston Therapy in Treating Patients With Primary Malignant Brain Tumors
• Antineoplaston Therapy in Treating Children With Primary Malignant Brain Tumors
• Antineoplaston Therapy in Treating Children With Visual Pathway Glioma
• Antineoplaston Therapy in Treating Patients With Refractory or Recurrent Intermediate-Grade Stage II, Stage III, or Stage IV Non-Hodgkin's Lymphoma
• Antineoplaston Therapy in Treating Patients With Recurrent or Refractory High-Grade Stage II, Stage III, or Stage IV Non-Hodgkin's Lymphoma
• Antineoplaston Therapy in Treating Patients With Mantle Cell Lymphoma
• Antineoplaston Therapy in Treating Patients With Primary Central Nervous System Lymphoma
• Antineoplaston Therapy in Treating Patients With Advanced Mesothelioma
• Antineoplaston Therapy in Treating Patients With Stage IV Melanoma
• Antineoplaston Therapy in Treating Patients With Multiple Myeloma
• Antineoplaston Therapy in Treating Patients With Recurrent or Refractory Waldenstrom's Macroglobulinemia
• Antineoplaston Therapy in Treating Patients With Metastatic, Recurrent, or Refractory Neuroblastoma
• Antineoplaston Therapy in Treating Patients With Neuroendocrine Tumor That Is Metastatic or Unlikely to Respond to Surgery or Radiation Therapy

Are all these trials running at the same time? The way the titles are written it seems as if the antineoplastons A10 and AS2-1 are being trialled in children and adults with a fairly broad range of cancer types (or stages of a particular cancer type).

Searching for antineoplaston A10 brings up 61 hits and searching for antineoplaston AS2-1 brings up 60, so possibly there's at least one Burznyski trial listed in the 62 that has nothing to do with antineoplastons (could be someone with the same name of course).

Is that usual where the type or stage of cancer has a very poor prognosis and no-one has the luxury of time to wait and see how these ANPs perform in one situation before trying them in the next?

For comparison I had a look at GLP-1 and spotted a few that had similar titles, but there seemed to be much more variance in title, and trial status. One is even listed as having results...

Feb 2012 - Searching just for the antineoplaston A10 trials, we get 61 of which:

• 0 are recruiting
• 50 are of unknown status
• 7 are withdrawn
• 2 are terminated
• 1 is completed
• 0 are active, not recruiting
• 1 is not yet recruiting

Note that Unknown status incorporates some of the other categories

UNKNOWN (RECRUITMENT STATUS)

A clinical study in ClinicalTrials.gov with a status of Recruiting; Not yet recruiting; or Active, not recruiting and whose status has not been confirmed within the past 2 years. Studies with an Unknown recruitment status are considered open studies or closed studies, depending on their last recorded recruitment status.

Nov 2011 - Here's what I found in November 2011 (but I think I searched on Burzynski rather than antineoplaston A10 so there's a caveat there)

• 10 are recruiting
• 35 are of unknown status
• 7 are withdrawn
• 2 are terminated
• 1 is completed - it began in March 1996 and was completed in 2005. Its clinical identifier is NCT00003509 and this does not appear anywhere in PubMed.
• 5 are active, not recruiting
• 1 is not yet recruiting

While writing this post @majikthyse also published a post on the Burzynski Clinic which makes very interesting reading.

Comments relating to conspiracy theories or personal attacks on anyone will be ignored.

Burzynski is not going to be in Birmingham after all

The last time there was something newsworthy about Dr Burzynski and his unlikely cancer claims lots of science and skeptic bloggers (including me) wrote a variety of posts on the topic which were corralled together by Josephine Jones. Ever since there has been a gradual but continual trickle of posts and tweets adding to the volume.

I suspect, and I might be wrong, that the more blog posts there are highlighting the strangeness of (and seeming lack of good evidence for) Dr Burzynski's claims the more likely they are to show up in Google when people search for it (I think it's a bit more complicated than just numbers and the blogs probably need to be fairly prominent too)... but anyway it's worth a try.

So this post says nothing new, it merely adds its voice to all the other posts - I suppose it's kind of a 'bulking agent'.

• Apparently Dr Burzynski was due to speak at a cancer convention in Birmingham, UK.
• He's now decided against it, as referenced on the convention site - the reason they give is that he wants to prevent the people behind the convention from experiencing the same 'attacks' that he's experienced though I can't help wondering if he also suspects that some skeptics will be there, monitoring the situation.
• I heard about his change of mind through @lecanardnoir and @_JosephineJones
• I wrote this post that you're reading right now.

And why are his cancer claims unlikely? Both Cancer Research UK and the surgical oncologist Dr David Gorski have really good explanations of that.

See also Burzynski Cancer Clinic which links to Rhys Morgan's post outlining his treatment by the people behind the clinic (not in the 'treating' cancer sense but in the threatening a schoolboy who wrote about them sense).

Web of Trust aka WOT - a visual warning for iffy websites

I use and like Web of Trust (WOT) which sits on my Chrome browser and looks at every link that appears in Google searches, and on Twitter, and gives me a quick rating on whether or not the site is dodgy. This doesn't mean you can abdicate responsibility for checking something out of course, especially as it is not perfect (see below) but it's an extra tool that can be useful.

"WOT is a community-based, free safe surfing tool for browsers that provides website ratings & reviews to help web users as they search, surf & shop online."

Not that long ago I wrote rather cautiously about one way in which I was enjoying its use (cancer clinics). I was cautious because I thought there was a marginally-above-zero chance that I might be comically and ineptly sued (however this appears to have dissipated hooray) but didn't want to grease the skids, so to speak.

Here are some screenshots of what it looks like when running (completely unobtrusively, other than the appearance of these circles) on a Google search:

Wikipedia is green but is it rated highly because it's given a fair account of this clinic and pointed out the concerns people have, or because it's a trusted web domain name on its own?

I think the green tick is to do with McAfee, the second icon is a green circle but I think it's always that - it's the second green circle that's of most interest. The darker green the more it's been rated trustworthy. However, the imdb link has a positive rating, not sure if this is 'gaming the system' or just inherits that imdb is mostly benign (other than a few attempts at pop-ups that is).

Here's what Twitter looks like... Tom's post has a grey circle with a blue question mark by it, this just means that the site hasn't been rated yet. My own blog is pale green (compared with the darker green of CivilSociety's page in the last tweet) but I'm not sure if that's because someone has (or someones plural have) said that my blog is fairly trustworthy or that it gets a free-ish pass being a Google site.

You can create an account and leave comments about websites, which are visible to others who have WOT installed (as far as I can remember I've never commented on any of the MoreNiche websites but have been interested to see their ratings as given by other people). Charlie Brooker posted a tweet the other day that said "Cinemas that don't screen films properly should be marked w/graffiti to alert those who care. Like the Hobo code: http://bit.ly/qaeDim" and I think WOT has a touch of coding / alerting about it.


Further reading
The layered web - partially hidden conversations (by me, 3 December 2011, already linked in post above) http://brodiesnotes.blogspot.com/2011/12/layered-web-partially-hidden.html

How do you know if you're in danger of being sued?

Following on from the recent Burzynski stuff, had I actually received* the emails that @lecanardnoir and @rhysmorgan have had recently I'd have initially been a bit anxious.

Probably after a while I'd have noticed the language wasn't quite right and that some things didn't add up but I suspect my first reaction would have been rising panic. I startle easy ;)

• What to do? How do you know if someone sending you these emails is a credible threat and how should you respond (both in any actions you take and in your reply)?
• Can anyone make a citizen's 'cease and desist' or must it come from a competent lawyer? Not everyone is allowed to prescribe medicine, for example.
• Even if it's clear that the email is not from a lawyer what should you do?
• Is there a defined procedure in place? For example can someone just sue me anyway or must they first tell me what they don't like and give me an opportunity to make amends?
• Is there some 'guidance for dummies and skeptics'?

*well I might have done had Marc spelled my email address correctly!

The Burzynski clinic has ever so many trials

I'm not sure what to make of the Burzynski Clinic. Twitter is currently filling up with the disturbing news that one of their PR people has sent the blogger @lecanardnoir a threatening lawyerly type letter (which you can read, along with his response, on his blog).

This coincides with the fact that there is a benefit gig happening tonight with some big names - the purpose is to raise money to send a little girl with cancer to the Burzynski Clinic in the US for a treatment for which, as far as anyone can tell, there isn't enough evidence that any benefits outweigh the risks. There are some testimonials but those don't count unfortunately.

It's surprising that there's not much evidence because there are so many trials ongoing, 61 according to one of the clinical trials register - ClinicalTrials.gov. This is a basic search for any record that includes the word Burzynski anywhere within it so I should be cautious before drawing any major conclusions because a trial might be nothing to do with them but just reference them...

As far as I'm aware a trial registration isn't an indication of quality or whether or not the trial is a fair test of a treatment, merely that it's been registered.

Of these 61 trials:

10 are recruiting
35 are of unknown status
7 are withdrawn
2 are terminated
1 is completed - it began in March 1996 and was completed in 2005. Its clinical identifier is NCT00003509 and this does not appear anywhere in PubMed.
5 are active, not recruiting
1 is not yet recruiting

There are plenty of trials published by Burzynski about antineoplastons (the name of the intervention) although they don't seem to match up with the clinical trials registration (I've not looked at all of them so it's certainly possible that some of them do).

It seems there was a big trial but that it fell apart amidst big fights...