Stuff that occurs to me

All of my 'how to' posts are tagged here. The most popular posts are about blocking and private accounts on Twitter, also the science communication jobs list. None of the science or medical information I might post to this blog should be taken as medical advice (I'm not medically trained).

Think of this blog as a sort of nursery for my half-baked ideas hence 'stuff that occurs to me'.

Contact: @JoBrodie Email: jo DOT brodie AT gmail DOT com

Science in London: The 2018/19 scientific society talks in London blog post

Monday, 25 November 2013

OSCHR - Office for Strategic Coordination of Health Research - more info needed

See acronym buster at end.

I was a bit surprised to discover, three weeks ago, that there was such a thing as OSCHR. It's been around since the Cooksey Report (2006, see also House of Commons Sci & Tech report) and you would think that I might have clocked its existence given that I've been working in a sphere that's at least peripherally related to health research. In fact I even spent some time in the Research Team as a grants administrator.

True, charity funded research is a bit separate from government funded research but I was still a bit surprised at my ignorance here. I wonder what else I've missed.

Anyway... as I see it OSCHR oversee the funding (both spend and decisions made) that MRC and NIHR do and it reports back to BIS and Department of Health.

From the UKCRC there's this, which explains how it all hangs together, but I still feel I need a bit more.

"In 2006, Sir David Cooksey published a review of the institutional arrangements for the public funding of health research in the UK, which proposed the establishment of the Office for Strategic Coordination of Health Research (OSCHR) to act as a central coordinating body for health research. The UK health research budget is now ring-fenced into a single fund, and OSCHR provides strategic oversight of the budgetary division and research strategy of both the Medical Research Council and National Institute for Health Research.

OSCHR reports to the Department of Health and the Department for Business, Innovation and Skills , and includes structures to allow strategic input from the devolved administrations."

I know who's on the OSCHR board and that it holds the purse strings but how does it make decisions and are there any reports more recent than the 2008 one? Presumably it puts out calls periodically for funding (or is this done via MRC / NIHR?) as a charity would, perhaps in addition to 'apply any time' grants. Does it fund anything through an acronym other than MRC / NIHR? Does it get money from anywhere other than BIS / DH?

Thank you :)

Acronym buster
BIS - Governmental Department of Business, Innovation and Skills
DH or DoH - Department of Health. I think they lost the 'o' in a reshuffle
MRC - Medical Research Council (one of 7 research councils, all fall within UKRC)
NIHR - National Institute for Health Research
OSCHR - Office for Strategic Coordination of Health Research
UKCRC - UK Clinical Research Collaboration
UKRC - UK Research Councils




Sunday, 24 November 2013

ASA's list of therapies and what may be claimed for them

This page is likely to be of use to doctors, scientists and skeptic bloggers, complementary health practitioners and consumers.

It comes from the Committee of Advertising Practice who set the guidelines that the Advertising Standards Authority uses in determining if marketing and advertising material are OK, or not. Since a large number of complaints are made about misleading websites promoting alternative or complementary health treatments the section on 'Therapies' is now quite extensive, reproduced below.

I like to think of this as a handy list of itemised nonsense. It is not illegal to sell any of these treatments, as far as I'm aware, but it is not fair to make claims for them that cannot be defended.

In each there are two aspects to consider (1) health-condition-specific concerns and (2) treatment-specific evidence.

(1) Health-condition-specific concerns
If an advertiser is making claims about treating really serious health conditions (asthma, cancer, diabetes, depression, high blood pressure etc) but isn't medically trained themselves or doesn't have access to a doctor in their clinic then the ASA is more immediately concerned about the customer not having appropriate medical care. The evidence for the actual therapy becomes a secondary concern in this situation. The ASA has also expressed concern if it thinks that customers may be discouraged from seeking appropriate medical care.

(2) Treatment-specific evidence
This covers all the claims that are made for the treatment and the ASA appear to want 'robust evidence' - generally the sort of thing that's published in peer-reviewed journals, ideally a meta-analysis of smaller trials. Evidence from individual small trials is more of a compass bearing than an agreement that you're in a particular place and not generally seen as robust, it depends on the study of course. Testimonials don't count.

Full alphabetic index: AdviceOnline index
Searchable index: AdviceOnline database

The relevant T section including all therapies currently listed, I added Testimonials as a bonus.



Asking for evidence directly - not sure how well it works: Lyme Regis Reiki

How I heard about Lyme Regis Reiki
I've been taking an occasional glance at the #WDDTY (What Doctors Don't Tell You) hashtag on Twitter, and also seeing exchanges between various people and @_wddty (their Twitter account).

I spotted someone (Lyme Regis Reiki) who'd asked the magazine if they'd published much on reiki then go on to say that they'd had some success in treating someone with epilepsy. They didn't claim that they'd cured epilepsy though, so by itself this isn't much of a big deal.

They also claimed that there was scientific evidence showing that reiki could help with high blood pressure. Again nothing to get too worried about as they are not claiming that *they* can help with this. But I did ask them for their evidence and was pretty much ignored.

Agonies over asking for evidence
I'm not sure what made me ask since I'm of the opinion that it just never comes across well and have written about this before. Whenever you ask someone for evidence, particularly someone that is likely not to take it well, you are putting yourself in a position of (a) aggression and (b) power.

(a) It can't be nice to be on the receiving end of this, particularly if the line of questioning is graceless and sarcastic but it's extremely difficult to couch the question in polite, professional terms without also sounding a bit threatening. (b) If the marketer doesn't agree to your reasonable demands then presumably you're going to have to follow through and report their website / marketing material to the relevant authority - this can never really come across as anything other than "if you don't amend your website I'll report you to the ASA". I'm not fond of confontation or meannness but if someone's making misleading health claims then this makes me a lot less sympathetic to them.

There are also issues of what people understand as 'evidence' (clue: not testimonials, not books unless they have references to the primary research literature) and if you are constantly telling someone, or a group of someones, that their quality of evidence isn't up to scratch it's hardly a recipe for harmony.

But the fact is that making health claims without good evidence can be dangerous. It can lead unwell and vulnerable people to make health decisions that don't help them, may harm them and will likely waste them money too. So I tend to act quite quickly if I see something that concerns me. Since I'd rather not have a fight I generally just get on with reporting the organisation to the ASA or other regulatory authority, depending on the claims made. Probably I should have done that here but I thought I'd give it another go.

Claims on Twitter mostly harmless
So far what they've claimed on Twitter hasn't really fallen within the remit of the Advertising Standards Authority's (ASA) remit - they've not claimed that they are doing any of this through their service. However they are tweeting about reiki and have a link in their Twitter bio to the website for their commercial practice so being cautious is no bad idea.

The only tweet I've received in reply confirmed that the evidence exists if only I do my own research for it. I've seen this type of statement before and I don't understand it - if evidence clearly exists why not point enquirers towards it? Another person also asked them for evidence and was sent a link to a book. To be fair the book might do a very good job of putting the research evidence in context but what I certainly wanted and what the other enquirer wanted was links to the primary research publication. Perhaps we'll remain disappointed.

Claims on website of concern
Meanwhile, I am disappointed in some of the content of this person's website which has a bulleted list of health conditions whose symptoms they say can be helped by reiki.

lymeregisreiki.vpweb.co.uk/ [clickable version]
Reiki can help improve the symptoms of many illnesses including:

*Depression
*Anxiety
*Insomnia
*Grief
*Pain
*Chronic Fatigue Syndrome and M.E.
*Fybromyalgia
*High blood pressure
*Infertility
*Low self esteem
What the ASA and CAP allow reiki sellers to claim, and what they don't
Unfortunately this type of marketing information isn't permitted by the ASA who are following the guidelines from CAP (Committee of Advertising Practice) on reiki, which say that marketers need robust evidence to claim any physical healing effect, which is basically what you're doing if you claim that reiki can help with symptoms.
"To date, neither CAP nor the ASA has seen evidence to support claims that Reiki can have a physical healing effect on the body.  If marketers claim that it does, they should hold robust evidence (Rule 12.1)."
The ASA is also concerned when marketers list a bunch of quite serious health conditions that need appropriate medical supervision - if the reiki clinic doesn't have an appropriately qualified doctor or similar on staff then they need to be particularly careful how they refer to conditions that need medical supervision.
"Marketers should not discourage essential medical treatment for conditions which should be supervised under a suitably qualified healthcare professional (Rule 12.2)."
Although a half-arsed medical disclaimer doesn't usually wash with the ASA there doesn't appear to be anything encouraging people to check with a proper doctor first on this page.

In one of their rulings the ASA is very clear on what can be said about blood pressure:
"We considered that the serious medical conditions referred to in the ad - high blood pressure, stroke and addictions - and the references to the benefit and help provided by Reiki in treating those conditions, could discourage readers from seeking essential treatment for serious medical conditions from a qualified medical practitioner. "

Next steps
I'll check in a day or so, if the list of conditions is removed (I've asked them to do this) then that's the end of it as far as I'm concerned. If not, I'll report the site to ASA. I'm aware of at least two other people who are also looking into this, they may well just report anyway.

There's no guarantee the ASA will do anything about this as they've recently dealt with a large number of reiki and websites promoting related therapies through a master-complaint put in by the Nightingale Collaboration (and I wrote about my contribution here). And let's face it there are far worse examples of misleading advertising, but telling someone you can help with depression and high blood pressure without good evidence is not great in my book.

In the last week the ASA has reported on its strengthened relationship with Trading Standards to ensure that misleading advertisers are aware of their legal responsibilities. While the ASA cannot fine or imprison anyone (all they can really do I suppose is embarrass them or cause negative PR to appear on search engine results pages) Trading Standards can take action to stop a company from trading as well as work within the Court system (fine for a first offence and so on) under various trading laws and acts.

ASA rulings against specific reiki sellers
Comments
Please don't be boring. If you are going to come here and tell me how I have misunderstood reiki then please include links to real good quality evidence, the sort that would stand up in an ASA investigation. If you do not have this and are just convinced and believe that reiki's great then bad luck because I'm convinced and believe that reiki is just pleasant hand-waving. People who like that sort of thing will undoubtedly feel better after a session of hand-waving, that's not in doubt. But if you want to claim that it can help with serious medical conditions, show me the (good quality) evidence. Testimonials will be ignored, thanks. 




Here's what I might put in an imaginary film / TV festival of weird British stuff

Edit: 22 October 2022 - I've updated the videos as most of the links had stopped working!

- - - - - - - - - - - - - - - -

When I came across the Belbury Parish magazine [now resolves to Ghost Box records - "a group of artists exploring the misremembered musical history of a parallel world"] I had a bit of an 'aha' moment and understood better all the slightly odd cultural reference points I'd grown up with. It was all a bit weird in the 70s and 80s though I'd probably not really noticed it at the time.

"There's nothing wrong with men in their forties enjoying shared tastes and nostalgic triggers, but do they have to be so po-faced about it?" The Quietus

If I was running an imaginary film festival / celebration of television programmes at the BFI here are some of the things I might put in it. Of course there'd be anti-deep-vein-thrombosis breaks every couple of hours otherwise I'd just sit watching the entire thing for a day, lost in a dwam.

I've put small versions of the YouTube videos below but just click to enlarge / watch them at YouTube.

The Clangers (1972)
Narrated by Oliver Postgate (who also narrated the marvellous 'The Alchemists of Sound', a 2003 about the history of the Radiophonic Workshop) with music by Vernon Elliott.

The Clangers - The Music of the Spheres.


The original video is no longer available but showed Tiny Clanger helping to get a flying machine to actually fly by using notes from the musical tree proving that you just need the right music to get going.

See also: Ivor the Engine


Dr Who (1974-ish)
Beyond the wonderful Tom Baker and co I remember very little about the actual storylines, it's really just the music - written by Ron Grainer and arranged by Delia Derbyshire, and tweaked by various people throughout the series' life that grabbed me.

Mark Ayres explanation, in the The Alchemists of Sound, of how it was put together with tape loops is one of my favourite bits of recorded television. It's at 15m 40s (see below). 



See also: Blake's Seven

Children of the Stones (1976)
"...widely regarded as the scariest children's television serial ever made. It's chilling theme music, eerie atmosphere sending a generation of terrified youngsters scurrying behind the sofa" - so says the continuity announcer for Stewart Lee's Radio 4 programme about the serial. I never saw it - I found it by accident while I was looking for another kids programme (not found it yet, bunch of children, something to do with an amulet, but it's not Children of the Stones).

I watched this last Christmas in full, loved it.




Sherlock Holmes (1984)
The Devil's Foot (1988)
Jeremy Brett and Edward Hardwicke head off to Cornwall and while there investigate some mysterious deaths. It involves a rather good bit in which Holmes experiences a sort of botanical acid trip with some colourful cinematography and some strange music, at about 36 minutes in.

If there ever was a Sherlock prom I think I'd secretly quite like it if they included the theme tune from this series as well (edit: they did!).


 

Robin of Sherwood (1984)
I watched this religiously (along with Sherlock Holmes) every week when it was on, usually round at the house of family friends. We loved Michael Praed and the pagan references. And the music of course.




Box of Delights (1984)
I actually have no recollection of this at all - I discovered it last year after reading a blog talking about strange programmes from my childhood. Not sure how I can have missed it but it's a little bit magical and has a great theme tune. 




The Moondial (1988)
I was 18 when this was broadcast so probably getting a bit old for this sort of thing but I loved the opening theme music and secretly wished I was called Araminta ;)




Alchemists of Sound (2003)
The only programme I've seen since the 1980s that really captures some of my childhood, thanks to the music of the BBC Radiophonic Workshop. I saw it when first broadcast and stayed up until 3 in the morning to watch the repeat. Fortunately it's now available on Daily Motion (note there are audio ads in it).







Berberian Sound Studio (2012)
Peter Strickland's evocative film about sound effects / Foley. It's wonderful and spooky, set in a 1970s Italian studio while making a film about witchcraft with a lot of women screaming, the on-screen violence is never shown, only through sound effects - it's also very funny. Soundtrack is by Broadcast, the Quietus quote above comes from the article (they like the soundtrack, just complaining about the term 'hauntology'). Toby Jones plays an English sound engineer who goes to the studio to help them with their sound effects, he doesn't have a very lovely time there.









Wednesday, 20 November 2013

Diabetes and language used in healthcare and research

NB. Likely a few more links to be added in, I am working on a slightly uncooperative wifi network at the moment

I took part in a work-related Twitter chat last night, about avoiding errors in the self-management of diabetes.

The project I work on, CHI+MED, is looking at ways of making interactive medical devices safer but to do this we don't just study the devices themselves but also the people who use them and the systems that the machines are used in - basically it's a "sociotechnical" model sort of thing.

People know that they make errors in using machines. Sometimes the system helps them to prevent this, for example I've made good use of the delete key while typing this post, someone had the good sense to add one in to keyboard design. Sometimes people develop their own cunning plans to prevent errors. These are 'resilience strategies' (strategies that make them resilient to error) that are either generated by the person themselves or picked up from colleagues - they're rarely 'in the instruction manual' and they're not part of any official training.

But they can be really useful - both to other people who are using that medical device, but also to researchers who want to find out the strategies people employ to prevent mishaps.

And that's what the chat was about - what are the sorts of errors that people with diabetes (particularly Type 1 diabetes who are regularly monitoring their blood glucose levels and adjusting doses of injected insulin) might make and what tricks have they developed to try and avoid making an error.

One interesting things that came up was the language used by error researchers and how this might conflict with that used by people with diabetes or diabetes researchers. Dom (a colleague on CHI+MED who was co-hosting the Tweetchat with @OurDiabetes) uses terms like slip, mistake and violation which have precise meanings in the context of human factors and ergonomics research.

One of the people participating in the chat felt that the word violation was a bit of a strong term - it certainly carries negative connotations. Suzette Woodward has a helpful post explaining some of the examples of violations (eg of policies) in a healthcare setting: Working to rule?

Language used in different disciplines often has the potential to offend, or even just misfire, when heard by other people out of context.

I remember, when working in a GPs' surgery 10 years ago, reading that "the patient denied having any chest pains" and being amused at the implication that the doctor knew full well that the patient was having chest pains but that the patient wasn't having any of it. That's not what it means of course, it just seemed a strange way to say "the patient reported that he was not experiencing any chest pains" but "deny" carries other meanings to those not immersed in this use of language.

Similarly there are terms used in healthcare research looking at situations where medication is just not taken. It might be forgotten, lost (stolen?), unusable (damaged) and so not used. Equally it might be intentionally not used.

The various terms I came across that meant "not taking his or her medication" were non-compliance, non-adherence and non-concordance. All mean more or less the same thing but non-compliant sounds a bit more "naughty diabetic*" and "non-concordance" suggests a certain disagreement between patient and doctor.

*I do of course mean "naughty person with diabetes" ;-)

Further reading