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).

After eight years I'm leaving Job 1

Update 4 Jan 2016
Not that surprisingly, three years after making the team redundant they are now looking for a part-time Information Officer ;)

---

Sadly the entire Library and Information Team, where I've worked for the last eight years, is being made redundant and our functions will be taken on by others in the organisation. No hard feelings and all that, but I can't help but be a little bit sad as I have immensely enjoyed (and been rather good at, even if I do say so myself) answering the more obscure scientific questions about diabetes from allcomers, among other rewarding tasks.

These queries came from members of the public, healthcare professionals, researchers, news media (via our Press team), school pupils and students in higher education as well as colleagues in other teams. I and my team-mates answered a huge range of enquiries over the years including questions on medication interactions and insulin allergies as well as helping people find and make sense of statistical information to help them in commissioning services.

One of the things I did quite recently, more for myself than anyone else, is create this ad hoc database of resources for diabetes statistics. It's one part capturing facts, one part capturing the route to finding those facts when the information changes year on year. What with the Office for National Statistics moving all their pages around I thought it best to record my 'footsteps' in trying to find a piece of information.

Diabetes Statistics
https://sites.google.com/site/diabetesstatistics/

Any errors in this database are solely mine (I am the only one who can edit this!) and not my employer or colleagues! Use it with caution... and don't rely on anything.

I hope that people with diabetes will continue to find answers to the questions that bug them and am a bit sad that it's not me answering them. I suspect I will turn into a bit of a sad case trawling the internet looking for questions about diabetes to answer ;) I will possibly blog a bit more about the topic of diabetes too (probably at http://sciencediabetes.posterous.com but here too) - I've not really felt comfortable saying too much about it in case it looks like I'm a spokesperson!

In terms of 'what next?' I shall be working more days at Job 2 so shan't starve, and I'm on gardening leave for two months after next Friday so am still part of the organisation until the end of June.

I thought you might enjoy the secret logo I created for the team back when we were known as the Science Information Team. It was 'drawn' by me in 2003 using the free mspaint (paint.exe) software, which I still use on almost a daily basis.

Ye Olde SIT Logo, 2003 by me.

We used to be the SIT: Science Information Team (our most recent incarnation was as the LIT: Library and Information team). On the left is a sub-Fischer projection of glucose in the 'chair' conformation (it can also form a boat-shape) - I think you can see what I did there with the subtle reference to 'sit' and 'chair'... the letter i was taken from the old alphabetic Info Centre on our website.

On the inability to accept praise - advice to businesses

I was writing this on the ferry home and thinking about customer service, complaints and feedback. I've no complaints about Thames Clippers' ferry service or customer service although I have previously pointed out that their marketing emails have been a bit bizarre although they've recently got miles better.

This is a wider point on organisations expecting complaints (fair enough, they are usually more time-sensitive than pleasant comments and need to be handled) but not really having any kind of mechanism in place to handle compliments, or seemingly even the expectation of receiving any. 

I shall illustrate this with two anecdotes that have become immortalised in my family as mildly amusing tales that we retell each other every so often.

1. Wha's rang noo?
My mum had a lovely lunchtime meal in a cafe in Glasgow while visiting family. At the end of the meal the waitress asked her if she'd enjoyed the meal.* Mum said she had and that she was having a lovely nostalgic time (she grew up in Scotland) and she'd like to pass on her compliments to the manager if possible.

At this point in the retelling we'd all start giggling (cos we knew what came next). The waitress, with my mum in earshot, popped behind a panel to tell the manager that "there's a lady who wants to speak to you" to which the manager replied, sighing, "wha's rang noo?" (what's wrong now?) which my mum found amusing, and rather telling.

2. Um... yes, I'll just put you through to the complaints department.
My dad's car was a bit overcaffeinated in that it seemed to run more on battery power than petrol and it kept 'not working'.  I don't know what was wrong with it (I never learned to drive) but the battery appeared to ambiently discharge itself overnight even though nothing had been left switched on. 

Eventually my dad called the RAC and someone turned up promptly, swapped some bits and bobs around (I like to think there was some dramatic soldering involved but probably not) and within an hour dad's car worked again and the engineer was on his way.

Dad was very pleased and rang the RAC again to say thanks for a job well done. He asked the receptionist who he could talk to to pass on a compliment?

Receptionist: "...?...?..." 

Dad: "OK then, some feedback?"

Receptionist: "I'll put you through to the complaints department" 

Dad: "But it's not a complaint, the service was prompt and efficient and the car's working." 

Receptionist: "Um... yes, I'll just put you through to the complaints department." 

So dad explained to the complaints department that he'd had a nice experience and wanted to pass this on to someone. This apparently threw them...

Having feedback framed only in terms of complaints seems odd, no? Of course all organisations need to have a way of handling complaints - these can be warning flags that something is not well and needs prompt fixing or possibly damage limitation - but how do organisations handle positive feedback? And how are they seen to handle positive feedback, within and outside the organisation? Is it shared (systematically I mean, not just "oh look we got this nice email from someone") but added to some sort of potentially searchable database (in the same way that complaint histories might be recorded, because they required an exchange of correspondence or an official response) available to all staff and actively shared with them?

Incidentally if people type "complaint" into your organisation's website search are they taken to a page that says "complaints" or "feedback"?

*I'm not sure if this was the same waitress who once asked my mum "could yiz have went mair?" (could you have had more?) at the end of a meal but our pool of family anecdotes definitely suffers from some cross-contamination.


 

 

Might #AcademicSpring change the way in which journal articles (esp medical) are written?

I've been wondering what might happen if (when) access to scientific journal articles becomes common and 'normal'.

Presumably there's a gradient of 'ability to access information' as well as a gradient of 'can understand this information'. Predictably I'm all for people being able to get hold of information, but I also hope it makes sense to them and that there are people they can ask if it doesn't. There are plenty of helpful blogs and discussion forums where people can talk about articles or the evidence for particular claims. Long may it continue.

On my train journey home I wondered if, once journal article access starts to become mundanely easy for anyone, there will be a change in the way they're written - to accommodate a wider readership, particularly for medical articles.

People with a health condition are often very motivated to find out more about it and this can result in them reading original medical articles and sometimes paying for them.

Either they will or won't understand what's in the article. Someone might understand perfectly well all of the technical terms in the article but might miss something that isn't said or, for example, draw mistaken conclusions about a study in mice that might not translate into people.

Are researchers who've published on Disease X or Condition Y often contacted by people who have or care for someone with X or Y, and how do they respond? (Sometimes people will come to Patient Charity Z who've funded the research or commented on it, and ask for more info but not every condition has a dedicated patient charity and other online / offline communities are important too).

I think it will be interesting to see if articles that start to be published in a climate where they're readable by anyone will mean that they'll be written in a different style, with an eye to a non-specialist audience. This would probably make me quite happy.

There'll still be a need for people who can put things in context, even if the article's written in such a way that it doesn't need quite as much interpretation.

If journal articles are read by more people might this increase the discussions between researchers and people affected by a condition (same for non-health stuff, if people are interested in it and able to read it). Will even more scientists be writing blogs? Will they get some academic credit for doing so too? Will patients get a better understanding of their condition and / or the processes of research. Hope so.

Edit: 30 August 2012 - I've just spotted this post from Stephen Curry who, when writing a paper for the open access journal PLOS One, made the conscious effort to try and make the text easier to understand by a wider non-specialist audience. A group of school pupils in Australia took him at his word and commented on the paper's intelligibility. It turned out he'd also actually written (in The Guardian) on the issue of scientists potentially becoming more aware of the general public reading their work, perhaps because of demand from that public.

"Arguably, most members of the public would not be able to understand the primary scientific literature even if they had free access, but the mere fact of its availability – through a shift to open access – should stimulate a healthy demand from the public for more digestible reports from the scientists they support. Direct exposure of the scientific community to the public appetite for research results could even have positive effects on the formulation of research priorities."
Source: Science must be liberated from the paywalls of publishers

Further reading
Academic spring: how an angry maths blog sparked a scientific revolution The Guardian 9 April 2012 by Alok Jha

Science must be liberated from the paywalls of publishers The Guardian 10 April 2012 by Stephen Curry
Research that is funded by the public should be freely available to all - a move to open access modes of publication is overdue

Academic Spring on Wikipedia

Patients Partipate! - a project run jointly by UKOLN, The British Library, AMRC (Association of Medical Research Charities), Sage Bionetworks, Digital Curation Centre and JISC in which patient charities who fund research can work with patients / carers and get them involved in the writing of lay summaries.
» See also "Patients Participate! Bridging the gap between information access and understanding"

Concordat for Engaging the Public with Research was developed by the UK’s research funding bodies. The aim of the Concordat is to create a greater focus on and help embed public engagement with research across all disciplines in the higher education and research sectors.

Dealing with comment spam on Posterous and what comment spam is for

(1) Dealing with comment spam on Posterous

Whenever I get comment spam on ScicommJobs (almost all the comments there are spam, it's a jobs site and not the sort of thing where people would post genuine comments) I get an email alerting me. This lets me click on the link and, if I'm logged in, delete the spam.

Not that long ago I discovered that the Activity button on Posterous will speed this process up - just click on that to see what's recently been going on. 

Yesterday I discovered how to change the settings so that I can moderate all comments on this blog - hooray. It's an option on the privacy settings. 

• To find it for your blog go to http://posterous.com/ and log in.
• Click on either Spaces in the top bit or Manage spaces on the left (it's the same link).
• Find your blog in the list that appears and click on the downwards arrow next to it, then click on Space settings
• In the grey panel on the right hand side click on Privacy settings
• The third from the bottom is Who can comment and here you can select to moderate all.

I've got it set so that everyone can comment (they don't need to log in using Twitter, Facebook or Posterous) but that all comments are moderated. You can also disable comments entirely.

Also in the Posterous section you can choose whether or not people can download material that you post (it shows a download link next to each ScicommJobs post because I want people to be able to download the job descriptions that I'm adding) and you can password-protect the entire blog (you can always make individual posts private and available only to people who have the obscured link).

(2) What comment spam is for

By comment spam I mean stuff which has a link to a site that sells something. There are two intended audiences for this: human eyeballs & wallets, and Google and other search engines.

If the spam is posted on someone's blog then someone might click on the link, which increases traffic to the linked site, and they may even buy the product. 

Even if no-one ever clicks, search engines will still crawl a blog periodically to index all the pages. Indexing these pages includes all the links that the blogger has posted on their site themselves as well as any that have been added by commenters. 

Lots of blog posts that point to a particular site (let's assume the commenter is commenting on several blogs) tells Google that lots of people are linking to this site, and this might raise the 'rank' of that site.

I understand that Google tweaks its algorithms every now and again to keep up with this sort of thing and so it may well be that this has less positive impact on a dodgy site than it had in the past. Here's an article from 2005 by Stephen Johnson which mentions a variation on 'spamdexing'. I also heard him talk on Radiolab - this link is a section of the full Emergence podcast.

Anyway, I'm in the habit of deleting a spam comment as soon as I spot it - just in case ;)

---------

I tweeted about the Posterous tip the other day but after receiving a notification of a comment needing moderation on my Blogger post here Phen375 weight loss pills "reviewed" I thought I'd write a small post about it because it was pretty subtle and I could easily have missed the entire point of the comment if I'd not checked the link in the commenter's name - I posted only the text of the comment and marked the original as spam.

JoApr 7, 2012 03:23 - AMAndrew Bailey asks:
"I've seen a few sights claiming that it is legal and that it also doesn't require a prescription. I'm just concerned that perhaps these sites are scams, so does anyone have some information about whether or not Phen375 is legal? I want to try these but I don't want to give my money to a scam or break the law. Thanks!"

JoApr 7, 2012 03:38 AM
The comment above sounds perfectly genuine but as it was linked to a phen375 review site, which was embedded in Andrew's name, it's actually (admittedly quite subtle) spam.

Most spam comments are easy to spot because they're irrelevant and use poor English - sometimes they even include the link to the product in the comment but most sneak it into the name. 

This comment looks exactly like the sort of comment I'd post - it's relevant, asks a valid question and uses pretty good English. But a quick hover over any blue links to check made it clear that this is just a ruse to get a link on my site. I admire the sneakiness ;)