52 weeks in public health research, part 18

Posted by Catt Turney and Jean Adams

From Catt Turney: One of the things I like about the DECIPHer's Cardiff office is that pretty much everyone, staff and students alike, is based in the same building. This means the dark alleys of email can often be avoided in favour of face-to-face talking, and the PhD students feel just as much a part of the centre as the staff. This tomato plant is one of eight brought in by a PhD student at DECIPHer, all of which (plants, not PhD students) were quickly adopted and are now accessorising various windowsills. I'm now facing the dilemma: take it home and protect it from the sub-zero conditions of the office over the weekend, or leave it open to the elements and allow it compete with the others in the Great DECIPHer Tomato Plant Competition 2014?

From Jean Adams: after convincing myself there was absolutely no way to explain the concept of an escalating financial incentive to research participants, I came across this perfectly simple example of how it could be done at the supermarket. Thanks for the advice, Waitrose.

From Jean Adams: I rarely meet real-life research participants. When I was early enough in my career that that would have been my bread-and-butter, I was entirely involved in secondary data analysis. Now that I'm doing more research involving primary data collection, I have 'people' who do the actual work. So it was nice to meet the members of our Parent Advisory Group the other day on a rare field-trip out of the office to a local Sure Start Centre.

From Jean Adams: It was great to welcome two new members to the most recent meeting of the Fuse Communications Group last week: Peter van der Graaf, and the #fuseduck. I think they'll both make really valuable contributions.

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Just to remind you:

Each Thursday of 2014 we’ll try and post around four pictures on the Fuse blog that capture our weeks in public health research, from the awe-inspiring to the everyday and mundane. Given that more of the latter than the former exists in my life, I foresee problems compiling 208 images worth posting on my own. So this is going to have to be a group project. Send me an image (or images) with a sentence or two describing what aspect of your week in public health research they sum up and I’ll post them as soon as I can. You don’t have to send four together – we can mix and match images from different people in the same week.

Normal rules apply: images you made yourself are best; if you use someone else’s image please check you’re allowed to first; if anyone’s identifiable in an image, make sure they’re happy for it to be posted; nothing rude; nothing that breaks research confidentiality etc.

Also, this doesn’t mean we wont also be posting words. You word-based posts are, as always, much appreciated.

10 top tips for getting published (tips 6-10)

Posted by Jean Adams

A little while back I wrote about a presentation I gave to the Institute of Health & Society’s new Early Career Researcher group on getting published. I only managed to cover tips 1-5 in that post. As promised, here are tips 6-10.

6. Do unto other as you would have them do to you

Tip number 5 was ‘review, review, review’. Tip number 6 is a direct follow up and really comes down to ‘be nice’. Everyone knows how crushing it is to receive a damning review of a piece of work that has taken years to complete. Don’t be fooled. These horrid reviews are blueprints in how not to do it – not templates for your next review. Reviews have to be critical to be useful, but they don’t have to be harsh, personal or unkind. There are ways and ways of saying your whole research programme is scientifically unsound and you need a wholesale re-think. 

7. Don’t make a rejection easy

Most assistant editors at most journals are unpaid volunteers. If they don’t do journal work in their ‘spare’ time, they do it in their ‘in-between’ time, around the edges of their real jobs. Online editorial management systems are good, but not great and it can sometimes be a bit of a struggle to keep track of all the documents associated with any one paper (original cover letter, original manuscript, two reviews of original manuscript, first response to author, revised cover letter, revised manuscript, two re-reviews of revised manuscript…). I am sure that most assistant editors have been tempted by the ‘reject’ button when they just can’t find what they’re looking for. You can reduce the chances of this happening by reading and following all the guidance provided. In particular, don't assume you know what the form letter inviting a revision says - read it carefully.

8. Expect rejection & find a (healthy) way to cope with it

A little while ago I was at a seminar delivered by a very well respected professor. The research they were presenting was just about to be published in The Lancet. During questions, the speaker told us about some follow-up work that was “currently doing the rounds of the journals”. This was a real reminder to me that everyone has papers that they struggle to get published: even important professors doing fantastic work that they think is really important. ‘Doing the rounds’ is normal. So you have to learn to deal with it – well. My personal preference is to ignore rejections for a few days. I see the email. I feel the sting. Then I let that dissipate before planning a time to read through the details and prepare the paper for the next place.

9. Don’t stop at publication

Getting published can be exhausting. After the research itself, the many rounds of drafting and redrafting, the formatting for endless different journals, by the time your paper is finally available for the world to see, the project has often long ended and the staff scattered. Despite this, publication in a peer-reviewed journal is just the start of the dissemination journey. If you really want people to read your paper, and find out about your results, you have to let them know about it. During your project you can keep a list of people who’ve said they’d be interested to read your results and send them the paper when it’s published. If your work might be of interest to the media, you can get in touch with your press office to talk about a press-release. You can present your results at academic conferences, and meetings of other people who you think might be interested. If you’re affiliated with Fuse, you might think about writing a blog post, or an evidence brief.

10. Enjoy the ride

If you work in university research, getting published is a core activity. Some people seem to be able to avoid winning grants, some people avoid much in the way of teaching, but you don’t come across many people who can wheedle their way out of getting published without attracting negative attention. If you’re going to do it, you might as well enjoy it. Enjoy the craft of writing, enjoy winning the battle with the reviewers, enjoy seeing your name at the top of the printed page, enjoy celebrating with your co-authors, enjoy how proud your grandma is of clever you.

As I said before, these might not be the toppest of top tips - just some things I thought worth thinking about. What are your top tips for getting published?

52 weeks in public health research, part 17

Posted by Jenni Remnant and Jean Adams

From Jenni Remnant: the contents of a cleaning cupboard in a community healthcare setting- where I was about to start cleaning.

From Jenni Remnant: giving blood.

From Jean Adams: once a month, IHS hosts a coffee morning to celebrate all the staff birthdays happening that month. The ratio of fruit:cake supplied seems to be slowly changing. Either way, there is never anything left by the time I get there. This month I got there early to take pics, but didn't want to disrupt the display by eating anything. By the time I got a chance to go back, there was a half eaten cookie and three blackberries left.

From Jean Adams: sometimes the best way to solve a tricky research design problem seems to be with a dry marker and a white board. After two hours with this particular problem and white board (and white board eraser), our conclusion was that our proposed solution was possible but probably wildly impractical. A lot of reading and talking later and it seems that the only real solution is to use a computer...

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Just to remind you:

Each Thursday of 2014 we’ll try and post around four pictures on the Fuse blog that capture our weeks in public health research, from the awe-inspiring to the everyday and mundane. Given that more of the latter than the former exists in my life, I foresee problems compiling 208 images worth posting on my own. So this is going to have to be a group project. Send me an image (or images) with a sentence or two describing what aspect of your week in public health research they sum up and I’ll post them as soon as I can. You don’t have to send four together – we can mix and match images from different people in the same week.

Normal rules apply: images you made yourself are best; if you use someone else’s image please check you’re allowed to first; if anyone’s identifiable in an image, make sure they’re happy for it to be posted; nothing rude; nothing that breaks research confidentiality etc.

Also, this doesn’t mean we wont also be posting words. You word-based posts are, as always, much appreciated.

The C word: consent

Posted by Jenni Remnant & Libby Morrison

This is quite personal as it is about my brother James, who has Down syndrome. In terms of consent to me blogging about this – I have discussed it with him at length and he has no issue about being identified. We decided that it was important the fact that he is my brother stays in, because this isn’t a story about ‘other’. 

Given what I have said above, I can see the contradiction/irony in that this post is, at least in part, about my brother’s lack of understanding of the word ‘consent’. Said in the right tone of voice and body language, my brother would say yes, or no, to almost anything; ‘you don’t want to do that do you?’, or ‘to be really independent* you need to….’, ‘now it’s your choice, but if I were you…’. He is totally and utterly committed and invested in the language of societal norms and government rhetoric – unsurprising when you consider that though much of the improvements gained for disabled people have been led (quite rightly so) from the front by people with physical impairments, the steps for learning disabled adults have been half hearted and almost entirely state-orchestrated.

Often I hear my brother and his friends say things like ‘real men drink beer/have girlfriends/ [insert hetero-normal masculinity based stereotype here]’. When out with him, women have cooed over him, leading him to believe that he is a ‘ladies’ man’. He believes Del Boy is a role model and style icon and has not understood that he is a comedy character that people laugh at. He has had no other option than overtly straight masculinity by which to define himself.

It’s strange, because actually I’m not sure that in another life he would be any of those things. Though I wouldn’t dream of conflating being camp with being gay, he is nevertheless flamboyant, adores musicals and, more significantly, has only had enduring meaningful companionships with men. The relationship he has with his ‘girlfriends’ involve being chaperoned maybe once or twice a month on ‘dates’, and perhaps bumping into them at day services or social clubs. One thing that can be said for the social world provided for learning disabled adults is that it is virtually defined by an obscure heteronormative asexuality (see Murphy 2003, Brown 1994, Yar & Rafter 2014 for more on this) that has resulted in James being a homophobic chauvinist that is terrified of his genitals and what they do. He also desperately wants to get married and have children. I wonder what consent means in terms of his sexuality. Tokenistic as it is.

To give meaningful consent to sexual acts, research participation or medical treatment has some requirements. It requires that those in the position of power (everyone else if you are someone with a learning disability) ask for it. They have to value you enough as a human being to support you in decision making, and provide you with the knowledge necessary to be informed.

James would probably be considered a ‘hard to reach’ participant in public health research. Which is ridiculous – he’s an extrovert – he’d leap at the chance to be involved in anything, he is desperate to be valued. It would take time and resilience on the part of the researcher to peel back the layers of rhetoric he is so programmed to regurgitate, ethical clearance would probably take some time – or would certainly have that presumption made about it, and perhaps this is why he, and the diverse, interesting and knowledgeable population of learning disabled adults is so neglected in public health research. ‘Hard to reach’ is ill-fitting, ‘easy to ignore’ is what he is.

*increase in ‘independence’ often equates to a decrease in support hours for adults with learning disabilities which can be a difficult concept to balance.

52 weeks in public health research, part 16

Posted by Dorothy Newbury-Birch and Jean Adams

From Dorothy Newbury-Birch: I've been working at home for the week going through lots of reviewers comments for a report. The report is larger than my PhD was - 55,000 vs 36,000 words! I have everything I need - coffee, my little bit of India hanging from the window, flowers (got to have for writing) and the little pot is my pot of motivation - this is the pot where the pink paper tabs go when I've finished that point - there is only six in the pot at the moment and 37 left to go but seeing the pot get fuller will be fantastic.

From Jean Adams: I spoke at a lunchtime seminar at ScHARR, Sheffield University a few weeks ago. It was pouring rain when I left Newcastle and I got soaked on the way to the station. By the time I reached Sheffield it was a beautiful day made a little happier by finding some interesting things on the walk from the station up to the university. This poem on the side of a Sheffield Hallam University building is by Andrew Motion. I couldn't read without hearing his voice in my head.

From Jean Adams: this fountain is just outside Sheffield station. I took lots of pictures of it, but my favourite was this selfie. #ego

Hang on...is that the #fuseduck doing some active commuting?

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Just to remind you:

Each Thursday of 2014 we’ll try and post around four pictures on the Fuse blog that capture our weeks in public health research, from the awe-inspiring to the everyday and mundane. Given that more of the latter than the former exists in my life, I foresee problems compiling 208 images worth posting on my own. So this is going to have to be a group project. Send me an image (or images) with a sentence or two describing what aspect of your week in public health research they sum up and I’ll post them as soon as I can. You don’t have to send four together – we can mix and match images from different people in the same week.

Normal rules apply: images you made yourself are best; if you use someone else’s image please check you’re allowed to first; if anyone’s identifiable in an image, make sure they’re happy for it to be posted; nothing rude; nothing that breaks research confidentiality etc.

Also, this doesn’t mean we wont also be posting words. You word-based posts are, as always, much appreciated.

Introducing Fuse duck: coming to a university near you to save Albert Park’s pond

Posted by Avril Rhodes and Peter van der Graaf

Remember when there was a brief outbreak of blog posts on knitting? Remember branded goods and the debut of the Fuse gloves? The gloves flopped spectacularly, strangely no one wanted them, at all. I have the world’s only pair. That was not terribly good news as I still had a wool mountain at home and a one pair of Fuse gloves didn’t make so much as a small dent in the mountain.

Undeterred and still working my way through the mountain, three years on, the latest product is the Easter Fuse duck. Easter Fuse duck is inspired by the brave ducks of Albert Park, who live just across the road from AskFuse HQ, Parkside, Teesside University.  These outstanding ducks co-exist with a number of environmental challenges. These include, without any trace of exaggeration, fishermen with their trailing lines (and a nice line in swearing), large quantities of unsuitable food thrown at them by passers-by, rubbish of all kinds floating around (humans are behind this too), unruly groups on outsize fowl shaped pedalos, and noise pollution from many sources including a café, play park, a roller skating track, and seasonally, a full size funfair. Otherwise it’s a rural idyll.

Albert Park duck pond, Middlesbrough

It’s a tribute to the persistence of nature that despite everything so-called sophisticated humans do to disrupt duck life they continue, and even flourish. Pollution might be one thing somewhat out of our hands (although  not entirely), but why do we keep dropping litter, paying others to tidy it all up, and making it difficult for wildlife? It’s such a commonplace public health hazard (especially in urban areas) spoiling everyone’s enjoyment and consuming resources in the clean-up.

Fuse duck decided it was high tide (boom-tish!) for action; luckily, Fuse duck recognises the value of collaboration wearing the life-belt featuring our combined University colours. He is appealing to all Fuse researchers for help in finding a new home for him after all the public health dangers he faced and to learn more about how to combat these dangers for his fellow feathery friends in Albert Park. With all the expertise in Fuse on tangled-up fishing lines (complex systems), unruly groups (behaviour change), healthy eating in the face of austerity (health inequalities), play parks and roller skating tracks (early life and adolescence), hearing aids (healthy ageing) and knowledge of duck language (translational research), Fuse duck is keen to meet the researchers that can save his pond!

Fuse duck hard at work

So our environmental warrior would like to go on a road trip to visit all the Fuse Universities and public health researchers within them: to sit in on their fascinating meetings, experience their randomised controlled trials (RCTs) first hand, join their physical activities, share coffee mornings and indulge in the latest evidence review with long and incomprehensible titles. If you would like Fuse duck to visit you for a week, please let us know and he could be winging his way in your direction. All we ask is that you let us know how he is getting on in your public health wonderland by writing about his adventures and posting photos on the blog.

After his tour de force, Fuse duck has plans to fly further afield to see our friends in practice and policy land, so watch this space!

Can you give Fuse duck a good home?  If so then email Avril Rhodes on Avril.Rhodes@tees.ac.uk

52 weeks in public health research, part 15

Posted by Lynne Forrest and Martin White

From Lynne Forrest: Having recently passed my viva and officially become Dr Forrest, my thesis has joined a colourful selection of other theses in the bookcase at our Institute, available for others to borrow. I’m not sure how often the hardcopy version will actually be read but it also gets published online 6 months later, which will hopefully increase access (the delay is to allow publication of papers from the thesis first).

From Martin White: This appealed to me on several levels. Fuse partners are working with collaborators across Europe to submit an application for a ‘Marie Skłodowska-Curie action’ – an application to the European Community for an Innovative Training Network (ITN), which will fund 25 PhD studentships. The acronym for our application is ÉTUDE (European Training hUb on behavioural Determinants), hence this musical quote and explanation of its relevance, which serves as frontispiece to our application.

From Martin White: Long delays are part and parcel of journeys on the East Coast mainline, which, if you work in the North East occupy a lot of our time, regularly commuting to and from meetings which inexplicably always have to be in London. On a recent journey, my train was ‘terminated’ at Peterborough and three train loads of people fought to secure a place on the only train going to London. I found a premium spot in the service area of First Class, where I set up my office and returned to reading a PhD. I was two hours late for my meeting…

From Martin White: When you spend 6-7 hours on trains in a day (see other references to East Coast mainline…), you need to seal yourself off from the rest of the carriage to focus on getting work done. My working day always starts (usually at 07.10) with Johan Sebastian Bach. Often a cantata, but sometimes solo cello or violin suites, or the incomparable keyboard works, such as the Goldberg variations. The rhythmic and harmonic structure of Bach makes it perfect for concentrated work.
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Just to remind you:

Each Thursday of 2014 we’ll try and post around four pictures on the Fuse blog that capture our weeks in public health research, from the awe-inspiring to the everyday and mundane. Given that more of the latter than the former exists in my life, I foresee problems compiling 208 images worth posting on my own. So this is going to have to be a group project. Send me an image (or images) with a sentence or two describing what aspect of your week in public health research they sum up and I’ll post them as soon as I can. You don’t have to send four together – we can mix and match images from different people in the same week.

Normal rules apply: images you made yourself are best; if you use someone else’s image please check you’re allowed to first; if anyone’s identifiable in an image, make sure they’re happy for it to be posted; nothing rude; nothing that breaks research confidentiality etc.

Also, this doesn’t mean we wont also be posting words. You word-based posts are, as always, much appreciated.

52 weeks of public health research, part 14

Posted by Michael Heasman, Martin White and Lynne Forrest

From Martin White: The MRC has this jigsaw-like object in its 13th floor stair lobby. I think it celebrates 100 years of the MRC (Centenary last year). I attended two meetings: the Population Health Sciences Research Network board, which has overseen ‘methodological knowledge exchange’, including the hugely cited MRC Guidance on the development and evaluation of complex interventions; and the Public Health Interventions Development panel, which funds competitive, small scale research.

From Martin White: At the Public Health intervention Development research funding panel we reviewed 29 applications in less than 3 hours. Two panel members per application. You do the maths. The applications are short (a couple of pages) and the stakes not high (maximum of £150k over 18 months). But, only few will get funded. The MRC assessment criteria demand a high level of rigour and innovation. Only an agreed score of 8 or more can be considered for funding. There is no room for error as an applicant.

From Michael Heasman: no description required.

From Lynne Forrest: This poster appeared in the 3rd floor coffee room at IHS recently, urging us all to take the stairs for health and fitness reasons and also to ‘avoid awkward silences’ in the lift! I do wonder if it might be more useful if the notice were stuck beside the lift on the ground floor? And, as public health evidence is what we’re all about, is anyone evaluating its effectiveness?
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Just to remind you:

Each Thursday of 2014 we’ll try and post around four pictures on the Fuse blog that capture our weeks in public health research, from the awe-inspiring to the everyday and mundane. Given that more of the latter than the former exists in my life, I foresee problems compiling 208 images worth posting on my own. So this is going to have to be a group project. Send me an image (or images) with a sentence or two describing what aspect of your week in public health research they sum up and I’ll post them as soon as I can. You don’t have to send four together – we can mix and match images from different people in the same week.

Normal rules apply: images you made yourself are best; if you use someone else’s image please check you’re allowed to first; if anyone’s identifiable in an image, make sure they’re happy for it to be posted; nothing rude; nothing that breaks research confidentiality etc.

Also, this doesn’t mean we wont also be posting words. You word-based posts are, as always, much appreciated.

10 top tips for getting publishing (tips 1-5)

Posted by Jean Adams

The Institute of Health & Society at Newcastle University has recently set up an Early Career Researchers group. I was invited to speak at their inaugural meeting on ‘publishing’. The brief was to speak for about 20 minutes and cover 10 top tips. I think I was an ECR just on the edge of the time when the phrase started being used, and the research community started to recognise ECRs as a group worthy of attention and nurturing. Sometimes the younger researchers at conferences were invited to pub crawls (not really my thing), but I don’t remember much in the way of encouragement to organise and support each other. The attendance at the IHS ECR meeting was huge and there was a definite buzz in the room. I felt quite excited, and flattered, to be there.

‘Publishing’ is a big topic and so much of how to do it seems to be about experience, working out what works in what situations, and a mixture of good luck and persistence. But I managed to come up with 10 things that felt worth saying – maybe not the toppest tips of all, but some things worth thinking about. The first five are here. I’ll cover the next five sometime in the next few weeks.

1. Know what your paper did (aims) and what it adds (message)

I think there are two sentences that almost all peer-reviewed papers hang on – the aims and the message. The introduction justifies the aims, the methods describe how the aims were achieved, and the results describe what the ‘answer’ to the aims were. You probably know what the aims were (perhaps you shouldn’t have started the research if were clear what you were trying to achieve?). The message might be harder. This is the one thing you want people to remember from your paper. The ‘what this study adds’ box; the ‘citable sentence’. The message is what drives much of the discussion and in some cases may be open to interpretation. So you might have to discuss it with your team to get it clear.

Knowing your aims and message are about knowing where your paper's come from and where it's going; map by Max Roberts

2. Write a detailed plan as a team

I think I have only written a paper plan as a team once in my career. So I can’t promise that this works. But I get the feeling that much drafting and re-drafting could be avoided if a detailed plan for each paper was agreed within the team before the real business of writing got underway. If we all agreed the general argument put forward in the introduction, the sub-headings required in the methods, the crucial tables/quotes/figures to include in the results, and the three or four main points under each sub-heading of the discussion, then perhaps there would be little more than re-wording required at the comments stage. Perhaps?

3. Pay attention to your laziness

We are all lazy. Different people just express it in different ways, and hit the point of can’t be bothered at different points. I’m sure we all do that thing of arguing there is a good scientific reason not to do something, when the truth is we just really cannot find the will to do it. There is a lot of self-discipline required in lots of areas of research, and sometimes you run out. This is okay, understandable, and expected. But it feels to me worth noticing and being truthful – at least to yourself – about when the real issue is laziness and when there is good scientific justification for stopping. Then at least you know what the problem is and how you should address or justify it.

4. Know when good enough is good enough

Which brings me to knowing when to stop. Because hardly any (no?) piece of research is perfect and there does come a point where you have to agree that what you have is good enough for what you are trying to achieve. This point might be different for different things. But you do have to be able to draw a line and move on or else you'll never get to the next project - which is always more exciting/interesting/likely to change the world than the current one.

5. Review, review, review

Papers in peer-reviewed journals are remarkably formulaic. I think the best way to learn to write them, is to read others. And the best way to make yourself pay attention to how other papers are written as you read them is to do so as a peer-reviewer. If you aren’t routinely asked to peer-review for journals (and generally you need a publication record for this to happen), the more senior people you work with probably are. It’s fairly normal either to pass reviews officially on to a colleague via the journal office, or to do a review together with a less experienced colleague. So ask if you want more experience of this. Informal peer-review can also be very valuable – to reviewer and reviewed. We all know that feeling of being too close to a piece of work and needing someone with fresh eyes to notice the glaring mistakes.


OK. That’s it for today. I promise to get around to writing up tips 6-10 in the next few weeks. In the meantime, what are your top tips for getting published?

52 weeks of public health research, part 13

Posted by Melanie Rimmer, Emily Henderson & Martin White

From Melanie Rimmer: Reminds me of the old days of searching journals by hand, card index files, the smell of old books, dusty shelves festooned with dead flies, and the volume you needed was always the one missing from the shelf. Without doubt computer searching is better, but somehow sterile. I miss the romance (but not the dead flies).

From Emily Henderson: Celebrating our new status as a WHO Collaborating Centre! The Centre for Public Policy and Health at Durham University is now a WHO CC on Complex Health Systems Research, Knowledge and Action, which links with Fuse’s new Complex Systems Research Programme.

From Martin White: It never ceases to amaze me how the irony of juxtaposing public health stories (this one courtesy of our very own Blog Editor) with junk food promotions entirely escapes newspaper editors. Nowhere more than in the free dailies that litter our public transport. This piece about a systematic review on financial incentives is rather good, which makes me think it may even have been written by Dr Adams.

From MartinWhite: When a small glass of coke contains 9 teaspoons of sugar, it is hardly surprising that the Coca Cola Corporation is investing heavily in ‘changing the conversation’. Coca Cola wants us to forget about the sugar and do exercise instead to burn it off. Their marketing is widespread in the Alps, as well as in professional sport, leisure and educational settings. Someone tell them why this isn’t the answer please…

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Just to remind you:

Each Thursday of 2014 we’ll try and post around four pictures on the Fuse blog that capture our weeks in public health research, from the awe-inspiring to the everyday and mundane. Given that more of the latter than the former exists in my life, I foresee problems compiling 208 images worth posting on my own. So this is going to have to be a group project. Send me an image (or images) with a sentence or two describing what aspect of your week in public health research they sum up and I’ll post them as soon as I can. You don’t have to send four together – we can mix and match images from different people in the same week.

Normal rules apply: images you made yourself are best; if you use someone else’s image please check you’re allowed to first; if anyone’s identifiable in an image, make sure they’re happy for it to be posted; nothing rude; nothing that breaks research confidentiality etc.

Also, this doesn’t mean we wont also be posting words. You word-based posts are, as always, much appreciated.

Today the ‘c’ word is – choice.

Posted by Libby Morrison & Jennifer Remnant

Choice is a buzz word, much favoured by politicians. We are continually being offered ‘real choices’! In learning disabilities, choice can be a difficult and complex thing, often linked to other ‘c’ words like ‘capacity’ and ‘consent’ These other ‘choices’ will be examined in further blog posts. But today I will be considering every day, common or garden choice.

When I first began working in the Health and Social Care sector 16 years ago, I very quickly became aware that many service users chose the same things. Of the nine residents in the first care home for adults with a learning disability that I worked in, ALL watched Coronation Street AND Emmerdale. In the next care home with three adults with a learning disability, again all watched Coronation Street and Emmerdale. In fact by the fourth and fifth place I worked in I had realised that it wasn’t just soap operas that all the service users watched, it was specifically ITV – unless it was Strictly on BBC1,  obviously! So despite the ‘choice’ word being used all the time – it was a key area in the 2001 Valuing People white paper – I began to suspect that television viewing might have been more to do with the carers' choice, rather than the service users.

Call me a cynic if you will.

It was the same with music, cinema, theatre and shows. If I look through my local theatre’s programme of events, I can tell you exactly which shows all the people in my area with a learning disabilities will be at. Because it is a FACT that adults with learning disabilities ALL love Elvis Presley and Abba tribute bands! Yes they do. Also all people with Down syndrome are very happy and smile all the time – especially when they are taken to see Abba tribute bands!

Call me a cynic if you like.

I worked for 10 years with a remarkable woman, who had a mild learning disability. I thought that I knew her quite well – her likes and dislikes etc. By chance one day in my car I put on a classical music programme. Almost immediately she began humming along to a Beethoven piece. I asked her how she knew it, and she said ‘oh my Dad used to play it on the piano. I love that sort of music’. I had had no idea. I began to take her to see some classical concerts – which she loved, especially pianists. She recognised a piece of music one time as coming from Swan Lake – I asked her if she had ever seen a ballet. She hadn’t, so we went – she loved that too. I asked another carer if she would like to accompany this service user to the ballet – ‘Ballet? – bally awful more like’ she said. 

Call me a cynic if you must.

I was guilty myself of limiting this service user’s choice. Not knowing a great deal about classical music myself, I generally suggested well known pieces of music, thinking that she would not enjoy more modern and perhaps challenging composers. In fact it was me that struggled with modern classical music. When at one concert there was some Benjamin Britten and Peter Maxwell Davies, she turned to me with shining eyes and said ‘I could have listened to that all night’.

Real Choice.

52 weeks of public health research, part 12

Posted by Lynne Forrest and Jean Adams

From Lynne Forrest: Whilst buying a coffee for taking on the train, I noticed that Costa now list the calories in each cup. My flat white had 145 calories, which meant that two cups contain the calorie-equivalent of a Mars bar. This seemed shockingly high to me and I’m sure I can’t be the only person who had no idea of the large ‘hidden’ calorie count in drinks. Apparently most of the big coffee retailers use full-fat milk as standard. Perhaps we need a public health campaign (similar to those that aim to reduce hidden salt and sugar in food) to get them to switch to semi-skimmed as default.

From Lynne Forrest: As very much a fair-weather cyclist, now that the weather has improved I’ve started cycling in to work again. I’m trying to embrace the idea of active transport and cycling has the added advantage of being quicker than the bus. Most of my cycle is across Newcastle town moor, which isn’t the most scenic of routes but is traffic-free. Later in the year there are usually lots of cows blocking the path (which scare me!) but it’s currently blissfully cow-free.

From Jean Adams: I love a bit of retro-branding-as-art, but was particularly struck by this image in a hotel room I stayed in recently. How did a soft drink brand manage to become part of popular culture? When will we work out how to do that for apples?

From Jean Adams: Last week was my last visit to Ashridge for NIHR Leadership Training. Despite my initial reservations, I've really enjoyed the experience and hope I've learnt some useful things. I will particularly miss the splendid early 19th century country house setting. And the fabulous food.


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Just to remind you:

Each Thursday of 2014 we’ll try and post around four pictures on the Fuse blog that capture our weeks in public health research, from the awe-inspiring to the everyday and mundane. Given that more of the latter than the former exists in my life, I foresee problems compiling 208 images worth posting on my own. So this is going to have to be a group project. Send me an image (or images) with a sentence or two describing what aspect of your week in public health research they sum up and I’ll post them as soon as I can. You don’t have to send four together – we can mix and match images from different people in the same week.

Normal rules apply: images you made yourself are best; if you use someone else’s image please check you’re allowed to first; if anyone’s identifiable in an image, make sure they’re happy for it to be posted; nothing rude; nothing that breaks research confidentiality etc.

Also, this doesn’t mean we wont also be posting words. You word-based posts are, as always, much appreciated.

Sometimes you know what the answer will be, sometimes you don’t

Posted by Jean Adams

Quite often, I’m pretty sure I know what the results of a piece of research will be before we start it. I’ve never written my pre-thoughts down, so who knows how good I am at predicting the results, and how good I am at gradually changing my mind as the results become available and convincing myself, post-hoc, that I knew that all along.

We have just finished a systematic review of the effectiveness of financial incentives for changing health-related behaviours. Before we started, the general chit-chat on incentives was that they work for short-term, simple behaviours, but not for long-term, complex ones; that the effects don’t last much beyond the period that you give the reward for; and that you probably need to give people quite a lot of money to have an effect. It wasn’t absolutely clear to me why people thought this, but some prominent people, who I respect a lot, said at least some of it in some high profile journals. So I assumed I was missing something.

Our review was justified because no-one had ever tried to bring evidence on financial incentives on all health-related behaviours together in one systematic review. But I was pretty sure it was going to be one of those worthy-but-not-earth-shattering bits of work that would just confirm what everyone says already.

Like all good (or maybe bad) systematic reviews, this one seemed to go on and on. And on. The whole ‘rule book’, register your protocol, approach to systematic reviewing makes me think that it should be a nice, clean, linear, no decisions made on the hoof, sort of research method. Maybe that’s how it is for you. But it never seems to be for me. I think I’ve been entirely explicit with my inclusion criteria, but then they don’t seem to be any use for screening the articles the search found. I think we’ve finally identified all the included articles. Then some inter-library loan we’d forgotten about turns up and the reference list identifies another five papers to screen.

I find all of this unexpected messiness a little unsettling. Obviously, the number of times I’ve experienced it means it shouldn’t really be that unexpected anymore. But it is. The messiness makes me think I’ve somehow done it wrong. At which point I start to enter the bad part of the creative cycle and it is way too easy to get stuck there. Especially when it takes a year and about 30 rejections to get your review published.

The creative process

I don’t know why it took so long to get our review published. I don’t think (by which I mean please tell me this wasn’t the reason, it took so long) it was that it was badly done. It seemed to be more that everyone thought that a systematic review on the effectiveness of financial incentives was not news. We know about them - they work for short-term, simple behaviours, but not for….see above.

But it turns out that that wasn’t what we found at all. Most of the evidence we found that met our criteria in terms of study design was on smoking - a long-term, complex behaviour. We found financial incentives to be more than twice effective as usual care or no intervention for helping people to quit smoking. Effect size for smoking cessation dropped off in those studies following up for more than six months after incentives had been withdrawn, but not entirely. The effects for short-term, simple behaviours, like coming for screening or vaccinations, was similar - about twice as effective as usual care. Effect didn’t seem to be vary massively with incentive size.

I still haven’t managed to convince myself I knew this all along.

52 weeks of public health research, part 11

Posted by Amelia Lake, Beki Langford & Jean Adams

From Amelia Lake: Recorder and earpiece at the ready for my first telephone interview after a relaxing week off. Next job: to tackle too many emails!

From Beki Langford: After a very busy week and far too many hours spent in the office working to a deadline, it was wonderful to get out into the sunshine at the weekend and see that spring had finally sprung.

From Jean Adams: preparing teaching materials on the office floor early one morning, I had a sudden flash back to the days when every grant application involved sending 22 hard copies, organising great piles of print outs on the floor, and a final sprint to the post office to catch the last post before the deadline.

From Jean Adams: some of this year's students on our MSc in Public Health and Health Services Research. I'm always taken by surprise when MSc teaching starts in September and then can't quite believe it can all be over so soon come March. Actually it isn't - there are still more classes, assignments, exams and dissertations to get out of the way. Just no more of me standing up in front of the class. This year's students were lots of fun and VERY opinionated - a great combination that makes a teacher's life so much easier.

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Just to remind you:

Each Thursday of 2014 we’ll try and post around four pictures on the Fuse blog that capture our weeks in public health research, from the awe-inspiring to the everyday and mundane. Given that more of the latter than the former exists in my life, I foresee problems compiling 208 images worth posting on my own. So this is going to have to be a group project. Send me an image (or images) with a sentence or two describing what aspect of your week in public health research they sum up and I’ll post them as soon as I can. You don’t have to send four together – we can mix and match images from different people in the same week.

Normal rules apply: images you made yourself are best; if you use someone else’s image please check you’re allowed to first; if anyone’s identifiable in an image, make sure they’re happy for it to be posted; nothing rude; nothing that breaks research confidentiality etc.

Also, this doesn’t mean we wont also be posting words. You word-based posts are, as always, much appreciated.

52 weeks of public health research, part 10

Posted by Bronia Arnott and Jean Adams

From Bronia Arnott: In a meeting with a policy-practice partner and I was given this funky glass which tells you about alcohol guidelines and also provides unit measures for different drinks. I was only drinking water out of it though!

From Jean Adams: when we moved into our purpose-built new offices a few years ago they were, understandably, a little stark and bare. This year a whole series of plants have mysteriously appeared in public parts of the building. They are very welcome new occupants.

From Jean Adams: the small cafe in our building sells a good range of food. But it makes me a bit sad that the cheapest hot option is a bowl of chips.

From Jean Adams: I tend to work on trains when I travel for work purposes. I feel a bit guilty if I don't and it's good, uninterrupted time for getting reading and thinking done. But at 8.45pm on a Friday evening it's okay to knit and read, isn't it?

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

Just to remind you:

Each Thursday of 2014 we’ll try and post around four pictures on the Fuse blog that capture our weeks in public health research, from the awe-inspiring to the everyday and mundane. Given that more of the latter than the former exists in my life, I foresee problems compiling 208 images worth posting on my own. So this is going to have to be a group project. Send me an image (or images) with a sentence or two describing what aspect of your week in public health research they sum up and I’ll post them as soon as I can. You don’t have to send four together – we can mix and match images from different people in the same week.

Normal rules apply: images you made yourself are best; if you use someone else’s image please check you’re allowed to first; if anyone’s identifiable in an image, make sure they’re happy for it to be posted; nothing rude; nothing that breaks research confidentiality etc.

Also, this doesn’t mean we wont also be posting words. You word-based posts are, as always, much appreciated.

The C word: care

Posted by Jennifer Remnant & Libby Morrison

I am a carer. I currently work on a ‘casual’ (another ‘c’ word!) basis for a mental health company. Prior to that, I worked chiefly with people with learning disabilities, and also spent some time as a PA to teenage twins with a physical impairment. Being a carer is hard work. Hard, underpaid, undervalued work. It reflects the emptiness of the rhetoric that society (and academia?) uses for service users, and the workforce that supports them. Being a support worker/care assistant/health assistant/personal assistant/care worker can be emotionally and physically draining. It involves the basics; knowledge of food preparation, hygiene and cleanliness and personal care in predominantly tiring shift patterns. If you’re going to attempt to work through Maslow’s hierarchy of needs (which I try my best to do – though it’s a mostly ideological attempt) you need to know how to keep another human being safe, how to feed them and how to keep them clean, whilst also offering service users opportunities to make real choices and where possible maintain personal autonomy, eg; ‘Would you like a piece of cake or an apple?’; ‘Would you like to be obese?’. Carers earning as little as the minimum wage are expected to make difficult and often quick decisions to support service users (often with complex needs) – when trying to balance health and safety considerations against individual choice and autonomy. 

One service user that I used to work with many years ago in a mental health service particularly tested the team I worked in; a typical exchange would be something like this:

Me - ‘Can you go to the toilet please?’

SU - ‘the toilet?’

Me - ‘yep, the toilet’

SU - ‘what for?

Me - ‘to see if you need to go’ (this person is regularly doubly incontinent )

SU - ‘what happens next?’

Me - ‘lets just take this one step at a time’

SU - ‘will I get stuck?

Me - ‘no you won’t get stuck, you didn’t get stuck last time, or the time before’

SU - ‘where do I need to go?’

Me - ‘the bathroom’,

SU - ‘the bathroom?’ (like that is the strangest thing he’s ever heard)...etc.

About 45 mins to an hour after first asking him, he might be on the toilet, he might not. He might go he might not. He might say he can’t, and then when you explained that you had other residents you needed to see and returned to the office, he might follow you there and urinate and defecate there in front of you. Or in the kitchen. Or in the corridor. Which despite not knowing either way, felt like a dirty protest – though in his defence, from macro to micro levels, there was a lot to protest about. 

He moved very slowly a lot of the time, but could also be impressively speedy. His level of understanding was very good, and so was his memory. He liked to talk about sexual violence, especially if it was a locally publicised crime, because then he could discuss with female workers the safety of their chosen route home. He worried about whether staff liked him, and asked them directly. He asked staff if they were his friends. He sometimes called the emergency services in the middle of the night because he woke up terrified that he was going to die. He has been exploited financially throughout his adult life. He was unique. He was witty, funny and thoughtful.

It was harder still to work with this service user when I found out that he regularly found the energy and time to hop into a taxi, travel down to a local brothel and pay for the company of young women. He had a preference for eastern European women. In a painful irony, many of the women service users I work with, especially with the current welfare reforms, have, or do, prostitute themselves.

This man was only one of ten residents in the mental health service he lived in. He started with 24 hour support, but as the money drip-dripped away, so did his support. The team that work with him have not had a pay rise in 4 years because they are not NHS staff.

I think for this example in particular the welfare state and its provisions are an interesting fit. I don’t even know how the staff that work with him now are going to begin to approach the ESA50 form when it comes, or the distress it will cause. In the last 6 months (in a different support role) I have supported various people to fill out ESA50 forms, and despite being as sure as I could be that all would go straight into the support group, the wait was unbearable. All of them smoked, and all of them increased their cigarette intake at this time. A number had to go to the doctors and have their anti-anxiety medication increased and those that drank reported drinking more.

Doing this job highlights the stark difference between the rhetoric at the top and the reality at the bottom. Nothing is packaged up smartly and neatly like some legislation would suggest that it is.

It also forces me to ask big ideological questions about what I’m even doing in a university – and what I want ‘impact’ to mean in terms of research.

Crumbs.

52 weeks of public health research, part 9

Posted by Bronia Arnott, Amelia Lake and Jean Adams

From Amelia Lake: years of hard work condensed into a succinct & excellent presentation. Ashley Adamson introduces Rachel Tyrrell's PhD presentation just before her viva. As one of her supervisors I'm still excited by the research Rachel conducted!

From Jean Adams: a welcome splash of colour on our desk/kitchen table at home reminding us that winter never lasts forever, and that mental well-being is as important as physical health.

From Bronia Arnott: at the train station again on the way to another meeting. Only to Durham for an askfuse meeting this time.

From Bronia Arnott: this is what my commute to work looks like - why not share a picture of yours?

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

Just to remind you:

Each Thursday of 2014 we’ll try and post around four pictures on the Fuse blog that capture our weeks in public health research, from the awe-inspiring to the everyday and mundane. Given that more of the latter than the former exists in my life, I foresee problems compiling 208 images worth posting on my own. So this is going to have to be a group project. Send me an image (or images) with a sentence or two describing what aspect of your week in public health research they sum up and I’ll post them as soon as I can. You don’t have to send four together – we can mix and match images from different people in the same week.

Normal rules apply: images you made yourself are best; if you use someone else’s image please check you’re allowed to first; if anyone’s identifiable in an image, make sure they’re happy for it to be posted; nothing rude; nothing that breaks research confidentiality etc.

Also, this doesn’t mean we wont also be posting words. You word-based posts are, as always, much appreciated.

The New Public Health System at Nearly One

Posted by David J Hunter

With the public health system changes in England approaching their first anniversary it’s a good time to take stock and reflect. Much remains to be done as new relationships are forged and structures bed down but already some matters are becoming clearer. They pose a mix of threats and opportunities.

The new English public health system has nearly reached its first birthday

It’s in the nature of local government that some local authorities will rise to the challenge presented by public health more readily than others. But to assume that Whitehall, in the shape of the Department of Health or Public Health England, can step in and sort things out is both simplistic and naïve.

As a new report from the Institute for Public Policy Research on the relational state concludes, complex problems defy solution by central government and require all stakeholders, notably local government, to work in new ways to reshape public services. A reliance on bureaucratic and market-based tools is no longer ‘fit for purpose’ if it ever was.

So what are some of the key issues with which the new system is grappling and which will set the future direction in the run-up to the general election in May 2015 and beyond? I briefly explore four here.

Place-based budgeting

The prize in having public health return to local government is the opportunity afforded to adopt a place-based approach to harnessing resources to improve population health across whole communities and neighbourhoods.

Forget the ring-fenced public health budget. This is an often unhelpful distraction and is certainly likely to be time-limited. The real agenda is about pooling local resources from a range of bodies and determining how best to allocate them to meet identified needs.

Already community budgets are being developed in some local areas and there is scope to take this approach much further perhaps picking up from where the Total Place Pilots left off under the last government in 2010.

Role of Health and Wellbeing Boards (HWBs) and managing unrealistic expectations

A paradox of the public health changes is that Health and Wellbeing Boards (HWBs) have acquired huge prominence and expectations are high. They are seen as the system leaders locally charged with the task of promoting integrated health and social care, public health and overseeing the reconfiguration of health services in local areas. Yet they have virtually no powers.

These are significant and complex responsibilities and there must be doubts about HWBs’ abilities to deliver what is needed across all of them. The risk otherwise is that HWBs are being set up to fail. The wiser HWBs will not allow themselves to be stretched beyond their limits and will identify their key priorities and stick to them. Nevertheless, the temptation to take on responsibility for the entire health system will be hard to resist.

Role of Public Health England (PHE)

The new kid on the block is Public Health England and considerable uncertainty surrounds its place in the new architecture, both nationally and locally. Concerns exist over its independence from the Department of Health and this has yet to be thoroughly tested although the omens are not promising.

On minimum unit pricing for alcohol, PHE rested its case on the evidence which ultimately the government chose to ignore. And this is the problem – the evidence rarely speaks for itself. But for a body whose existence is predicated on presenting the evidence what options are open to it should those to whom it reports choose to ignore its advice? ‘Speaking truth to power’ is much more complex and political than simply marshalling and presenting the evidence in the hope that good sense will prevail.

In a new report on PHE, the House of Commons Health Committee is critical of what it sees as an ‘insufficient separation between PHE and the Department of Health’. It concludes that although PHE was created ‘to provide a fearless and independent national voice for public health in England’ it does not believe that ‘this voice has yet been sufficiently clearly heard’.

Local authorities remain wary and puzzled by PHE and the new centres appearing in their midst. They instinctively feel they do not want a central presence overshadowing their work. Conceivably, PHE can offer valuable support and resources but building effective, high trust relationships is proving tricky. It also takes time which is at a premium.

With an election looming in just over a year’s time, PHE will be under growing pressure to prove itself and demonstrate impact. Few cherish ‘quangos’ or arm’s length bodies, especially new ones.

Changing nature of workforce in terms of skills and capacities

Perhaps the most threatening challenge to the public health system, or possibly the one that offers most hope for real progress depending on where you sit in the new landscape, is the public health workforce and the changes which beckon. The issue divides opinion sharply and is intensely political since it confronts long-standing and fiercely held professional views.

There is no doubting that many moving into local government from the NHS are struggling to find their place in the new system. For the most part this comes down to a lack of understanding or appreciation of local government and its political dimension.

The leaders in local government are not the officers but the elected members. Many bring to public health issues considerable extant knowledge and experience of their communities and while this may not represent evidence in the conventional sense, it remains a key factor in decision-making.

I predict that the public health workforce in a few years’ time will look and feel very different. There will be casualties and not all local authorities will get it right but if local government is to serve public health better than the NHS, with exceptions, managed to do, then it’s time for a change in the workforce and its skills base.

The new public health leaders need to be politically astute, able to communicate well with different audiences, form relationships that enable things to get done, and assemble the business case for investing and disinvesting in public health. There are some Directors of Public Health who get it but many still don’t or have no wish to. They live in hope that what has happened to them will, like the floods affecting large parts of England, magically disappear so that life can return to normal.

Looking ahead, the challenges facing public health are hugely complex and require careful assessment and reflection as they unfold. None offers easy answers. While there are risks that the system will be unable to cope and fail to deliver, there is also renewed hope that what is being put in place offers an opportunity to promote health and wellbeing in a way that was only rhetorically advanced prior to April 2013.