To gather up the crumbs: Whose table is it anyway?

Using only camembert, smoked salmon and controlled laboratory conditions, I had a revelation about the relationship between researchers and publishers. This is the story.

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I was in one of the world’s leading laboratories being given a tour of a potentially hazardous area, when suddenly the PA barked ‘ATTENTION ALL STAFF, ATTENTION ALL STAFF’. I was ready for the worst, to evacuate or suit up. But why was I there at all?

I’d spoken earlier that day about public involvement in research and publishing at an event at the inspiring Walter and Eliza Hall Research Institute.

It was organised and paid for by the open access publisher Biomed Central, in order to raise awareness about their work.

The publisher recently asked if I would volunteer my time to be a member of the editorial board of the new journal ‘Research Involvement and Engagement’ and also speak at their events in Australia. It is a new journal being run on a not-for-profit model and BioMed Central are world-leaders in open access publishing, so it was exciting to accept.

I found myself plunged into the mysterious, intriguing and often self-perpetuating world of publishing.

The speech I made essentially asked the question ‘What value do publishers add to research, and therefore the public good’. This is a different question from how valuable is publishing - to which the answer is ‘very’. Publishers make lots of money from publishing research, including open access research. In other words, I sought an answer to the question – ‘what are publishers giving back to the research process, in return for the money they take’.

I also asked how the public could be supported to be more involved in every stage of the research cycle, including publishing and dissemination. I ended with my usual plug for Tim Berners Lee’s eye-opening TED talk about open and linked data, which describes how everyone can access and interpret data - the very embodiment of public involvement in research.

If you’re interested, the full speech I made is here. Briefly, I said I think publishers have an important and crucial role in science, and posed a series of questions to reflect on why do publishers exist as they do - much as one may ponder ‘Why do we have a Royal Family?’ in a neutral and balanced way.

After I spoke, I met interesting people around a delicious buffet of cheeses and smoked salmon and then was fortunate enough to be given a tour of the research institute by a friend and colleague who worked at Walter and Eliza Hall Research Institute.

Within half an hour I’d met world-leading cancer researchers, people developing potential malaria vaccines and seen other labs full of people working late, missing out on time with friends and family in order to do countless wonderful things in the name of research.

As it was a working lab, naturally there were exciting things like negative pressure rooms and gene-sequencers - but also the reminders you were somewhere potentially dangerous, with ‘biohazard’ signs and emergency eyewash and showers at every corner.

Suddenly the PA system barked out ‘ATTENTION ALL STAFF, ATTENTION ALL STAFF.

They had my attention too.  I was ready to evacuate, or go on a three-day lock-down to hunt for an escaped malaria-carrying mosquito.

The announcement continued:

‘THERE IS LEFT-OVER FOOD UPSTAIRS. Repeat, THERE IS LEFT-OVER FOOD UPSTAIRS ’.

I laughed, half in relief - but on reflection, there was nothing that funny about it. The food was from the BioMed Central event I had spoken at.

Naturally, no one wants food to go to waste - but the funny side wore off when I saw researchers head upstairs to eat leftovers from an event, which like many awareness raising events, is partly funded by open access fees. These are often paid by research institutions to publishers to cover the costs of making it available without a ‘paywall’. However, many publishers also spend significant amounts of money to attract researchers to publish with them. Naturally it’s more complicated than this, but a simple thought struck me and I daydreamed…

I day-dreamed of a world where researchers doing life-saving work had publishers eating their leftovers, at events hosted by researchers. Events where researchers allowed potential publishers apply for the privilege of publishing them - and researchers decide who they will allow to publish their important research.

I imagined what would happen if all researchers collectively and suddenly decided they didn’t want to submit to ‘for-profit’ publishers because they felt reputations and ‘impact factors’ were suddenly irrelevant in a digital age, thus disrupting any business model based on prestige. Would less money go to publishers and more stay within research institutions for research? Would a sea of poor quality research drown good research with no one paid to check it, or would publishing just happen faster, like me publishing this blog -  the reviewing stage happening afterwards, in the open, in public?

It was a wild day-dream and I blame the blue cheese.

So dear reader, if you ever feel you are not worthy to eat the crumbs of others, always ask ‘whose table is it’?

In research, the table is for everyone, and we should all be invited to sit at it as equals.

We just need to figure out who is bringing the cheese and smoked salmon.

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Full disclosure: I receive no money for the time I volunteer with BioMed Central. I did, however, eat more than my fair share of cheese at one of their events.

Follow me on Twitter @jacknunn

Am I normal?

This article is about the dangers of the word ‘normal’, combined with the ever-increasing uptake of health and fitness devices. This has made me dream of a wondrous future for health technology, built on the ideal of open source.

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Today my phone told me I wasn't normal. My phone has a built in heart monitor. In fact, many smartphones are capable of giving a rough estimate of your heart rate these days. However my phone now pairs this hardware with some 'fitness' software. Today the software told me that my resting heart rate was outside the 'normal' range. In case there are any insurers reading I won't say if it's too slow or too fast and by what number but needless to say it gave me cause for concern. Suddenly I'm not normal, and more than that I might not be normal in a potentially lethal way. My first issue was with the word 'normal'. Normal can be a very helpful word, especially in a medical context. However, that context is one of statistics and averages, not of individuals. Therefore one person cannot be described as normal, normal is simply a result of statistics; a result being described as normal in comparison to a wider data set. However, normal takes on a different meaning for many people, especially people less familiar with medical terminology and statistics (for example people with a lower level of health literacy, some younger people, or those for whom English is not first language). ‘Normal’ in everyday life is linked to ideas about identity, social belonging and a host of other associations including appearance and behaviour. As I consider myself fairly able to navigate the Internet and seek out trustworthy sources, I was able to quickly learn I didn't have too much to worry about. However it doesn't take a huge leap of imagination to see somebody reading 'not normal' and worrying, perhaps even worrying themselves to death. At this point I would just like to say I think the use of technology in modern health and self-management is a wondrous and fantastic thing. Seeing friends with diabetes managing their blood glucose levels with gadgets, you can begin to see how some of this technology will soon go mainstream. However, developers of technology to help people manage their own health and fitness must learn quickly the dangers of getting it wrong. My example is a very small one, but points to the tip of an iceberg. A free market economy combined with a semi-regulated technology may create an environment which may not afford developers and manufactures the time or conditions to adequately test and refine their creations. This creates a new frontier for the public, patients, users and consumers of devices to have a more active role in the development and monitoring of the quality of information, devices and services. To anticipate this, I dream of some kind of voluntary international mark or accreditation which developers and manufacturers can sign up to (it would have to be international, or it would be pointless). To get the accreditation, developers must show that information is evidence-based, reliably cited and that the words used have been developed and improved by users and consumers and other members of the public. Additionally, there should be a clear way for people to comment and give feedback on content.
Finally, I would encourage all ‘for profit’ developers and manufacturers to make as much of their work and code as possible ‘open source’. If you’re ‘not for profit’ (charity or Government) then there’s absolutely no reason to hold anything back. There is little value to be gained from intellectual property surrounding bad services and products. Make them open source, make them transparent and let the world and the community improve and develop them. Ideas and code, along with hardware, will increasingly form part of a delivery model for a service, rather than the valuable commodity itself. In health technology, the value and revenue will likely come from delivering a service which is useful to people who need it (think of Google ‘giving away’ the Android operating system, letting other people build the hardware and code that then brings the revenue back to Google). Trust will form a huge part of a business model, with users increasingly handing over the most personal of data to servers, perhaps even our whole genomes. And a quick note on law. No one is above it and we all need it to be in place and upheld to protect everyone. As a result, yes, we need lawyers. But revenue won't come from paying lawyers to help monopolize discrete pieces of information that make a wider system work. That will just get us more lawyers.

The example that comes to mind is Apple, patenting the action of moving a finger across a screen to ‘unlock’ the device– or ‘performing a gesture’ as they put it. Well I’m imagining performing a gesture at the people who employ this kind of thinking, especially when applied to health technology.

To quote Dickens, the ‘lawyers always win’. To quote a more up-to-date source ‘the answer to the innovator's dilemma is not here in the courtroom suing people’ (John Quinn, Samsung's lawyer). The balance must be between employing lawyers to protect people and protecting the incentive for creativity.

Openness is a strength, not a weakness. A strange Orwellian paradox is that the more open and transparent a project is, the less likely we are to have products and services with vulnerabilities. In the panopticon, we have ultimate transparency and we need to strike a balance between having everything be open, shareable and hackable/improvable – and having security vulnerabilities in things like pacemakers. The United States Food and Drug Administration has already communicated on this issue and where this balance is struck should be a conversation everyone is invited to be a part of.

When I'm dying, and a robotic combination of code and hardware is keeping me alive, I want to know that anyone has been able to improve the code, that everyone owns it, and I, along with anyone else, have had the chance to make it better.

Is that normal?

Remembrance

I arrived eleven minutes late to the shrine.

The guns already fired, with poppy wearing figures making a slow return across the Yarra.

When the first shot fired I was  half across a bridge. I'd stopped over a railway line and took off my cycle helmet in awkward reverence, ignoring the endless rattle of the city.

A man near by stopped and looked at his watch, to check his silent pause was on the dot.

I've had less than half an hour of minutes in my life to remember.

As a child it's explained, but now it's understood. Almost.

I arrive and sit on grass near by as a brass band plays 'Waltzing Matilda', somehow somberly.

A smile creeps across my face.

Fast jets shoot by, flaring smoky promises to founding future shrines.

As the jet trails fade, I queue to enter the inner sanctum.

At midday, on the eleventh day of the eleventh month the sun shines on the word 'love', to help us remember.

I hope I can remember this for more than an hour.

To the lighthouse, with a twist.

Today I visited somewhere I've wanted to visit my whole life. You might have already guessed it's a lighthouse. For Virginia Woolf fans [spoiler alert], the twist is that I finally made it.
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I have fond memories of growing up in Loughborough. As more distant memories do, they blur into one. When I think of being 6 or 7, my memory is of walking home from primary school. In my head it's usually autumn, and my pockets are full of conkers and other clichés . There was a certain part of the path walking home that always seemed to have a big puddle, and busses would always splash you.

So I'd get home, the central heating would be timed to be on already. A loving parent would be preparing dinner, and, if my sister permitted or was absent, I would get the spot by the radiator and hold my legs against it to dry them out.

My sister and I would sit there, hour after hour, year after year, watching children's television.

Growing up in England as a child your television was either home-grown or American. That was basically it.

However, in the early nineties a new show appeared where everyone had Australian ascents and it always seemed to be sunny. It was called 'Round the Twist'. The music was catchy, the story lines were hilarious, occasionally supernatural, and usually with a firm (but not patronising) moral message. And it was always good. And they lived in a lighthouse.

Ask anyone who grew up in the eighties/nineties if they watched this show and they will sing you the theme tune. It was repeated solidly for over ten years and I think it's probably the best children's' show that's ever been made.

My sister bought me the box set a few years ago and I've watched a few of them recently. They're genuinely still really good and often, much much stranger than I remembered.

This show was my first glimpse at life in Australia. Before it, I knew very few things about the place. For example, the only fact I knew about Australia from the age of four until 11 was that they had bum-biting spiders. From 11 onwards I genuinely thought 'Waltzing Matilda' was the national anthem until I was in my twenties.

I remember that 'Neighbours' was always on after kids TV, but the few times I did stray into it, it was just adults sitting around talking and schools girls in gingham uniforms gossiping. I never lasted more than five minutes.

But 'Round the Twist' was great, and it got me into Paul Jennings (it was based on his books). I devoured his books and also read 'Misery Guts' (by Morris Gleitzman) about an English family that run a chippy that burns down and they decide to move to Australia. It was also made into a great TV series and I guess it was at that age that the seed of the idea of moving to Australia as an escape was sowed.

It's a well trodden narrative and films as recent as the 'Inbetweeners 2' still peddle the idea of it being a sun-soaked heaven on earth for British people.

So today, Alicia and I were driving our car along the Great Ocean Road to the lighthouse from 'Round the Twist'.

As for Virginia Woolf [no one has used square brackets more effectively than her], her book 'To the lighthouse' popped up in my head today for a couple of reasons. It's set during the Great War and paints a painful picture of the good life, just out of reach, and interjects short and powerful reminders throughout [usually in square brackets] that men are being mown down just across the channel. Without meaning to spoil the book, they always talk of going to visit the local lighthouse, but never get round to it. For me, the lighthouse represented the promise of the good life.

On the way to the lighthouse today, we drove through the memorial arch of the Great Ocean Road and were reminded that the road we were driving on was built by returned veterans from the first world war [to give them work] and it is the world's largest war memorial.

Alicia and I took it in turns to drive, so we could both gawp freely at the amazing views and spectacular waves.

And then, in the distance, the lighthouse appeared. A familiar sight from my childhood that has come to represent Australia in my mind.

As I drove there, I decided that not only is the Great Ocean Road the biggest memorial, it's also the most effective. I can't think of a better way to honour those murdered by war than to build a road that doesn't need to exist, just so it can remind you how beautiful life is, and how bloody lucky we are [have you ever, ever felt like this?].

So in wet trousers [by a radiator in England] I set out on a journey and arrived at the lighthouse.

What's app doc?

This is the story of how I used my phone to protect my balls from harmful radiation in Vietnam.

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It's no exaggeration to say that ever-improving technology has improved almost every aspect of travelling during my life.

I’m old enough to remember post-cards being sent unironically, long distance phone calls that cost more than a good meal and waiting four weeks to realise you had your thumb over the lens.

In Vietnam, for the first time ever when travelling, I brought a local sim and enjoyed unlimited access to the internet on my phone.

Of all technological progress, being able to access the internet anywhere really has changed everything.  No need to worry about storing maps offline, hunting out wifi hotspots to share your latest digital brag or losing irreplaceable photos if your phone should be suddenly snatched from your hand by a thief on a motorbike.

However, of all the online tools, the most unexpected thing which has really come into its own has been translation.  I downloaded Google's translation app (a babel-fish clone) for a bit of fun while bored in a station. I was astounded how far this technology has come.  It quickly became indispensable.

For those unaware, not only can you use text translation, you can also speak into it in a range of languages and have it read out the translation back to you. In some languages, you can just point your camera at signs and the phone quickly tells you what it says. Hopefully.

It is on the whole quite accurate, with a few hilarious exceptions. We tried to strike up a conversation with a friendly waitress with limited English skills. We hit a conversational hurdle so I whipped out my phone and she told me that she loved the smell of my milky cobra thighs. We still don't know what she meant.

The translation tool came into its own one day when I wasn't feeling well. Too much sleeping with the air conditioning on had given me a chest infection and I'd been in bed for a day or two. I generally try to avoid doctors when travelling but after coughing up a bit of blood one morning, I thought it was time to get checked out.

A local doctor was sent for. His English was limited, my Vietnamese stretched to two or three words.

Out came the phone, I quickly explained and he quickly diagnosed and said I needed a chest X-ray. He charged me less than two US dollars. Almost nothing to me, though a huge amount to some I’m sure.

Our hotel receptionist offered to drive us to the hospital and come along with us. I'm so grateful she did, as she did more than a translation app could do. She took us to the better, less crowded university hospital and also negotiated the 'local' price for me, which tourists don't usually get.

On entering, we walked past a trolley with a man who seemed to have been in a car accident and was bleeding heavily. I tentatively sat on a nearby bed and told Alicia to touch NOTHING. My trusty alcohol gel was poised. Within a few minutes, (after some more successful translation) I was given blood tests and the results within one hour and waited almost no time for an X-ray (unlike some of the poor local people).  

I walked into the room and was greeted by an X-ray machine that looked older than me and still used a film plate. I was asked to take my shirt off, stand facing the wall and prepare to be probed. By photons.

I suddenly remembered something was missing from all this and got slightly nervous I was about to be accidentally sterilised. Being able to say 'do you have a lead plate so I can cover my genitals’ is a phrase I’m convinced I wouldn't know had I been taught Vietnamese for years.

So happily, my phone was able to translate and I stepped into a lead plate harness-thingy which happened to be hanging next to me, as the radiographer had forgotten about it.

So don’t let anyone ever tell you that keeping your phone in your pocket is bad for your balls!

Beer fishing in Ha Long bay

Alicia and I were squid fishing one evening off the back of our boat.  We were staying on a small cruise boat to explore Ha Long bay. The day was taken up with exploring the world heritage bay, but the evenings offered little activity unless you fancied jumping ship and joining a Korean karaoke party on a neighbouring boat.  So we fished in the evening to pass the time.  

We weren't having much luck.  The technique involves putting on a bright light at night off the back of a boat and gigging a bright green lure off of a bamboo pole about six feet down. Not the most interesting kind of fishing.  The sky was black and the full moon was concealed by cloud.   So when we saw a small women-powered traditional bamboo boat coming towards us with lights on, it caught our interest.  Although the turtle shaped boats (about the size of a double bed) are a common sight in the bay, this one was coming right at us.  

'Cold beer' she shouted from 40m away. 

'Khong, cam on' we replied (no, thank you).

We had cold beer on our boat you see.  

'Cheaper cold beer' she said. 

Suddenly, we were interested.  Why pay 50p a can when you can pay 25p? Although we felt a bit naughty buying cold beer off the back of our boat, we justified it by saying we were supporting the local economy.  Quite what that economy is, or will become though, we weren't sure.  

It became even less clear the next day.

[The rest of this post is about the community of floating fishing villages we saw and my ponderings on why I was able to buy a beer off of the back of the boat.]

The next day we did a kayak 'tour' around a small floating fishing village - it was like something out of 'Waterworld'.  A strange mixture of traditional subsistence living and tablet computers.   

It was interesting to look around but I'm always uncomfortable taking photos of people's lives in a very direct and obvious way.  I'm not a national geographic photographer (yet...) capturing a disappearing culture, I'm just a visitor to a country where people are living their lives. 

But I was interested to learn more about these people who lived in floating villages though.

It seems that people have been making a living from fishing in this bay for thousands of years, with a culture stretching back into pre-history.  Traditionally, communities of less than a hundred would live around a small central barn like-structure, with families living, cooking and sleeping in their respective boats. 

When the site became a world heritage site, the single party Government decided that these scattered communities needed to be centralised and they 'rehoused' people.

They have been housed in floating metal shacks and everyone seems to have a private generator. They are laid out in more centralised and larger settlements. Having visited the Ethnology museum in Hanoi, there seemed to have been little attempt here to preserve some of the traditional architecture or layout, or even to recognise the people as part of the environment and keep them in the bay.

So now, they buy in water and fuel with the money from selling fish and in return, the Government doesn't tax them. The Government collects litter and empties septic tanks and evacuates them when a typhoon is coming. There is even a floating bank with a cash machine.  In addition, an Australian university built a school.   These are surely good things.  Education is always precious in any form.  

That said, you sense a certain way of life is being lost, but there is no point pretending it wouldn't have changed anyway, with new technology and materials available.  Bruce Parry explores this in his series 'Tribe'.  As a visitor, the worry is that you become part of a planned exploitation, where people become an exhibit, as if they are part of the natural history tour.  

The Government are considering rehousing all the people from the fishing villages in the city to work.  Aside from wondering who might catch the fish for the people in the city (other than trawlers) I wonder who thinks this is a good idea, why, and who has a say in a non-democratic system.  No one seems entirely sure. 

Trying to see both sides of this, clearly there needed to be some change.  Aside from the huge numbers killed every time there was a typhoon, there were issues with poverty and access to education.  In addition, the Goverment likely feared that the environment of the bay and therefore the status as a world heritage site would be threatened if people were living here and polluting. As in so many other parts of the world, cultures and communities that were once in balance with the environment now pollute as they make less and import more. 

As Bruce often concludes, it's just changing.  

They say the children here can row bamboo boats before they can walk.  I hope they have the choice to be fisherman as well as anything else they want to be, not just put into an economic position where it makes most sense to adapt fishing boats to row tepid beer around the bay for the whim of tourists. 

An Awkward Ending in Hanoi

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