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A New Deal on Data.

20 Wednesday Jun 2018

Posted by Thin Air Factory in Uncategorized

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Anna Middleton, big data, Collaboration, Consultation, Culture, DNA, GDPR, Genetics, Genomics, Genomics England, Health, Healthcare, Humanity, innovation, Julian Borra, lifestyle, people powered, Precious Data, Science, society, technology, The General Public, Vivienne Parry, Wellcome Sanger Institute

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Articulating the contract between science and people

By Anna Middleton1, Vivienne Parry2, Julian Borra3

ARE YOU WITH US?

For most of us it is hard to unpick the various declarations, assurances and guarantees made regarding the sanctity of our data. Even the General Data Protection Regulation still feels quite far removed from the everyday lives of ordinary people and is seemingly absent of any consultation with them. People need to both see and hear proof that they’ve been listened to. And they will act against anyone who seems to wilfully dismiss or disregard them – with every right to do so. With Facebook recently under the spotlight, there is tangible alarm about the use of our personal information by others. A breach of confidence or inappropriate access to data becomes really sensitive when we consider our most precious and personal information. In a health sense, what is more personal than our DNA? It’s what makes us ‘us’.

We broadly know that scientists, clinicians and academic institutions collect, store, research and share DNA and medical information as part of the global endeavours to understand human health and treat human suffering. As part of this endeavour DNA information bounces around the Internet on an unbelievably massive scale, in ways unknown to the person who donated the data.

We probably expect ‘science’ is gathering, storing, analysing and sharing our data with respect, transparency and integrity. Whilst we hope that there is choice in this and we hope that we have actively consented, have we ever really discussed this as a collective society? Is this even possible?

Is it widely known that particularly for genetic research it is only possible to interpret what a glitch in DNA means if there are hundreds of thousands of DNA glitches from other people to compare it to. So, Big Data and DNA go hand in hand and are necessary for genomic medicine to deliver on its promises.

But, if science is truly going to serve humankind in the best way possible we need to be clear on the terms of the interaction and transaction with people, on their terms. And to do that we need a simple and clear conversation; to be certain that we can fulfil their demands or at least understand their desires and concerns.

The need for a PEOPLE POWERED conversation

THE WHY?

A. The world of data is leaky.

B. Society’ hasn’t yet been part of a clear conversation.

When thinking about A. we have to be honest. Nothing is perfect. No data is 100% secure. No system is flawless. No regulation is absolute. No cache of information is 100% bullet proof – and if anyone promises that, they’re over promising.

This is a given that we have got to accept.

The type of data we are talking about here is the purest most precious kind, fundamental to our identity and existence. DNA and linked medical data – the foundational stuff that makes us who we are. Whilst our data might be ‘de-identified’, i.e. our name and address has been uncoupled from it, ‘anonymity’ cannot be absolutely guaranteed, because health information can always be linked to other personal information that is also on the web, and in our increasingly data-connected world, it is entirely feasible that we could, in theory, be identified from our DNA alone.

Which brings us to the B.

There are a lot of companies and regulatory bodies that broadcast commitments and assurances about data use. But as there has been no collective societal ‘sign up’ – so the pronouncements and commitments could be seen as one-sided. Aside from (relatively small scale) targeted engagement initiatives, there hasn’t yet been a global two-way conversation. No complete consultation. No reciprocity. No serious voice given to the most important people and the principal recipients of the good works undertaken with their data.

This is especially problematic when it comes to trying to get more people to share their precious DNA – their genome – to advance medical research and progress healthcare. Which is why the scientists need to ‘go first’ with starting this conversation.

THE CRUNCH

To move forwards we need:

  • the medical, clinical and academic institutions and the policy makers to clearly articulate the assumptions behind ‘people’s best interests’ and make this available for debate.
  • society to accept the tiny risk inherent in sharing their data with individuals, organisations.

We need the people on both sides to be in this together – mutually accepting and supporting the power of precious data sharing to make life better.

GOING FORWARDS

Drawing up the New Deal

Simplicity is key. Two clear parties. Two clear beneficiaries. And equally mutual rewards.

Consultation

This is a reciprocal people-powered deal that brings both sides together for better. And the people’s voice must be consulted, heard and written into it.

This will require a comprehensive consultation process involving ordinary people from all walks of society.

This should involve Qualitative and Quantitative explorations and interrogations of the topic and the terms of the deal. It should involve experts in large-scale, population engagement techniques.

How do we start the conversation?

We need a starting point for that conversation – an ‘in’; and starting with the genome isn’t it. We know from our own research that the vast majority of the broader public have not yet encountered the term. However, more than 90% of the public are online and feeding their data into the grid. Thus ‘data’ is the conversation starter that can take us to DNA.

The binary algorithms that once sat invisibly inside tech tools that serve humanity –- have now become visible – data has become a ‘thing’. Something we can point at, hold up, scrutinise and hold accountable. Data and its big brother, Big Data, are now discussed, interrogated and judged everywhere from the Senate Commission to Mumsnet.

So, Data; our relationship with it; and with those who harvest, explore and administer it ‘on our behalf’ gives us a rich area from which to begin.

The conversation needs to focus on how science and humanity collaborate and win, together.

Communication

Language and Tone are everything. Pub and school gate rules apply (i.e. it can be discussed anywhere and everyone can participate). This is a People Powered Deal. Not a Protocol.This is a simple deal that respects and honours every human’s right to control their own data destiny. And confidently go into an agreement where they believe that the terms will be upheld to the best of everyone’s ability. Which means it must be couched in clear simple terms.

Distribution

We need the New Deal to be visible to all at every level. This will require a robust channel strategy – so we would also need to test best channels for spreading the word. And answer some pretty simple questions: Is it an event based news worthy event? Is it a web based platform for commitment with visible partners? Is it a socially driven call for better – a clarion call where we give the New Deal to the people and get them to use it as a lever to agitate for better – a movement.

 

We feel it is time for science and policy to scrutinise their direction of travel – with less rhetoric about the benefits of research and delivery of science (i.e. going in one direction from them to us) and more about serving humankind, recognising that we are all in this together. We, collectively are a partnership and we need the people of society to feel they sit with the scientists so that the journey into human discovery is one made together.

 

1Head of Society and Ethics Research, Wellcome Genome Campus, Cambridge

2Head of Engagement, Genomics England, London

3Citizen, Founder of Thin Air Factory, London

 

Hoover bag, fish-tank, trophy cabinet & the art of wearing your intellect lightly.

30 Monday Nov 2015

Posted by Thin Air Factory in Uncategorized

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Arts & Humanities, Atomic, beano, Class, Culture, Doctorates, Evolution, Fish Tank, gogglebox, Hipsters, Hoover bag, Hubble Telescope, Intellect, Intelligence, M Theory, Race, School Swot, Sex, Showing Off, Sir Richard Attenborough, Smarts, society, Stephen Hawking, the Sciences, Tophies, Tribe, Universe, Wit, X factor

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Hoover bag, fish tank or trophy cabinet? Which one describes your model of intellectual self-awareness and demeanour best?

I spend a lot of time suspended (the animation part is discretionary) between two worlds where intelligence chimes very differently and how it is worn can speak volumes:

One brims with an ‘earthy’ scrum of normal people with their pop populism, non p.c humour, fun food formats, all things sporting, inappropriate music lyrics, sudoku and simple telly pleasures:

The other teems with a rare, heavenly throng of ‘visibly’ smart people (staggeringly smart actually) whose weather eye rests not just on Gogglebox but also on the material and scientific threads that stitch us in to our universe at a sub atomic and particular level from both the inside out and the outside in: a sort of Hubble-scope meets microscope universal view. Which takes some cells, grey or otherwise.

Whilst suspended between these two worlds I have come across a myriad of different shapes and shades of accidental, expressed or demonstrable ‘intelligence’.

But for the sake of this piece I have gathered them into three buckets.

These buckets are purely based on how people ‘wear’ their intelligence, knowledge and learning. They do not seek to make points of a sex, class, race, regional or tribal nature.

Intelligence, smarts and book learning are as likely to be mocked or marvelled at in a stately home in Cumbria as they are in a mock Tudor Semi in Southall and a single-parent council house in Cleethorpes.

So the three buckets are as follows:

Hoover Bag:

The majority of us, though our intellectual reserves have been honed to some degree in our childhood and teenage years through some form of formal education, spend most of our time applying a needs-must, auto didactical approach to the appropriation, collection and storage of any information, data, knowledge and the subsequent exercising of it via what might loosely be called intellect and its reflex inventive cousin ingenuity.

We just hoover up what’s in front of us at the time; all in the moment and for little reason other than to get through, survive, overcome, complete (or avoid) the tasks that life sets in front of us. Most of it tends to be transient: pockets of old knowledge from schoolbook rote and favourite teachers, the history channel, anything ever said by Sir Richard Attenborough, the odd TV show theme tune, an ex-lover’s ‘hot tunes’, news stories, sleeve notes off albums, film quotes, holiday resort locations, train times, exam questions, sweet names, bus numbers – the majority of it utterly random and seemingly disconnected – fluff and drivel: insubstantial, frivolous, fleeting. Only of meaning in the cats cradle of life and experiences in our head. All hidden deep in the bag unless we’re compelled to have a rummage.

But in that intellectual Hoover bag somewhere, amongst all the dust and atomic grains of everyday life – with a little rooting around – and if pushed – there are brilliant little treasures to be found: nuggets; the intellectual version of shiny marbles, lost lego characters, the odd ear ring, the missing washer off that clock, and a rare coin from somewhere exotic.

It’s not that we’re incapable of being a Fish Tank or Trophy Cabinet. On the odd occasion we can be very intellectually forthright. But. We’re just not that interested. Intelligence for most is directly linked to and in relation to what we must and need to do. Work. Earn money. Buy treats. The odd holiday. Survive. With Stickers. Intellect does not represent anything of value for us to wield in the world. Exams are for getting through. Real stuff is about what books cant teach and accolades cant fake: common sense, nous, drive, smarts.

Many people remain deliriously untouched by the compulsion to scale ever- greater heights and plumb ever-deeper depths of their intellect to pull out a plum.

There is in fact a running suspicion amongst a lot of people that too much learning is bad for you. Like fatty foods and alcohol.

Referring to people as being intellectually obese or an academoholic probably hits the referential nail on the head.

A lot of people feel an antipathy to the ‘too clever by half’ bunch, not too dissimilar to the feelings people harbour for the overly fat and the commonly drunk. Fat drunks take it to a whole new level of course.

Getting above yourself is one of the most common malaises they point to in the overly smart.

Fish Tank:

Go up just one notch and things change for the shinier. This is not yet the domain of the public academic, but certainly we are now in a realm where intellectual and academic possessions are going on show – they are becoming socially important not just to the trajectory of us as a person but also to our sense of self – our core identity. Their value isn’t hidden any more.

Fish tank intellects are suddenly about visibility: about being seen to be smart. It can start small. Quipy; witty. Ripostes. Razor sharp. ‘Quick wittedness’ gets bolstered with facts and bite sized pieces of knowledge not found on the history channel or in the newspaper. Suddenly we’re utilising our intelligence not just as an evolutionary survival mechanism but as a status marker, courting tool, and social lever.

However small, simple and under-populated the fish tank might be (We’re all quietly fond of the singular fish bowl inhabited by that gold fish) there is still a shiny attractive thing to look at.

Now fish tank intellect land is the bucket that provides the most flex and room for manouvre. Because you can go from one small intellectual goldfish in a clichéd bowl of water on a window sill to a multi-atmosphere self cleaning super sized wall set super tank with teeming shoals of exquisite, rare and increasingly expensive creatures.

From Intellectual Ahhh! to intellectual WOW! At the super scale end we find ourselves in the world of the serial collector of intellectual pursuits – reaching far beyond what they will ever need for their day job. The role of intellectual curator and collector of brightly coloured intellectual exotica as a matter of projected identity is a big deal for big fish tankers. But the big difference between these and the Trophy Cabineteers is the stealth nature of the presentation. However bright, gregarious and attention seeking the various and increasingly valuable baubles are, they are not presented ‘directly’. This is a world where proofs and demonstrations of intelligence are refracted through a prism of tangential referencing – obtuse, sophisticated, shrouded – usually hidden inside some trojan horse of life learning or experience story: presented simply as a new piece of the expanding fabric of their life.

But however subtle the presentation – these brightly coloured attractive and seductive entities are most definitely for show and for effect.

These ‘exotic splashes of colour have been plucked from the sea of knowledge to aggrandise us: to decorate our lives and create conversation focused on us through them.

Trophy Cabinet

Smashed it. No time or interest in discretion or subtlety. I’m smart. I’m bloody clever. And competitive. An intellectual winner. I’ve got more degrees and PhDs than I can shake a stick at. Doctorates are just the beginning. I probably have a few Honorary Executive positions as well. Sciences. Arts. Humanities. Classics. Don’t care. Whatever it takes. I am not in the business of doing a topic. I’m in the business of being really, really clever – and wearing it on my sleeve. If anyone’s up for a Nobel Peace Prize it’ll be me. Via national and then global recognition. I am professionally clever. Love academia. A wonderful pursuit. But please keep your intellectual generosity and shared collectivism of the mind to yourself. This is the expanding me show of cerebral fabulousness.

Simply put, you’ll all come to realize that you are cerebral dwarves and I am resplendent in the glow of my own brilliance. I am Alpha Meta.

A harsh caricature? Perhaps. But the dissonance between what we consider intellectually valuable in the more rarified halls of first world academe and what humanity actually requires to live thrive and survive on this planet can sometimes make us look at the trophy cabinet persona and their exceptionally competitive and vaguely sociopathic behaviours with a not necessarily benevolent eye.

For many, especially those struggling to make ends meet and having to work all hours to do it, and for those with a natural aversion to people who speak ‘in riddles’, it is hard sometimes to see the greater value in  relentless and unquenchable pursuit of ever greater learning. To many it is hard to see why anyone should support or laud someone wanting to remain the ‘eternal student’, wrapped in ever decreasing intellectual circles on arcane subjects that owe more to human ego than evolution.

The Trophy Cabinet model of flamboyantly worn intellect is mostly seen for what it ostensibly is: a tower of self-impression: a monument to ones ego. Questionable. Perhaps.

BUT, before we start measuring how many hands high the horse is we’re leaping on to sound off about the super bright, it must be remembered that these stratospheric arrogances of the mind and the intellect (as some see them) bring much to be thankful for: scientific advances and revelations that make enormous tranches of humankind more healthy and more resilient.

Some of these people have opened doors in the fabric, nature and story of human kind and the multi-verse we exist in. And we are better for it. And for them. Whether we think they’re too smart by half or not.

Witch hunting and pointing fingers at the nerds and the super bright people is a lazy pursuit. Existing, as many do, ‘on the spectrum’, dislocated from and uncomfortable around what most like to see as ‘normal’ people, they have their own crosses to bear: crosses that many of us would never countenance let alone endure. Brainbox baiting also smacks of being ‘chippy’. Take a swing ‘cause you make me feel bad! Thankfully now that Stephen Hawking is officially rock n roll, with his own Hollywood movie to boot, and the new tech hipsters are to all effects bearded and brogued members of the Nerd tribe, the old Beano comic view of school swots is changing – slowly.

Learning, the knowledge it brings and how the individual mind processes and leverages that knowledge to best and personal effect, to inspire and engage us may be a divisive topic; but we need to celebrate and embrace every type of intellect we have if we are to continue to live, thrive and survive.

And whether the gems of insight, idea and illumination that improve our everyday lives get shaken out of a hoover bag, netted from a fish tank or taken down from the trophy cabinet, I couldn’t care less.

Now where did I put that nozzle…?

Punks, Wonks & Breakout strategies for sustainability innovation.

21 Friday Nov 2014

Posted by Thin Air Factory in Uncategorized

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A.I., Bowie, breakouts, couples counselling, Eno, innovation, Oblique Stratgies, Peter Schmidt, punks, purpose, society, strategy, Sustainability, sustainable brands, venus & mars, wonks

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Innovation. We love it!

Especially in the trending world of sustainability.

And rightly so: the potential impact and influence of sustainability innovation in the shaping of a more positive human existence is immutable and immeasurable.

Innovation’s role in reinventing and reimagining the way the domestic, private and public sectors use, reuse and replenish the limited resources we have at our disposal is critical to our survival as a race.

So anything that inspires us to escalate our ability to innovate, whether that might be of the incremental, process or radical kind, deserves all the help it can get.

We cannot really afford for sustainability innovation to stall or fail – but it does so, all too often.

Failure is of course an occupational hazard in the innovation department: an almost welcome metric.

If you’re not failing you are most probably not trying hard enough to create meaningful breakthroughs in unchartered territory.

But often the reason for innovation faltering is not quite so grand. An all too human: stakeholder conflict; lack of communication or collaboration: or simply personal agendas and self interested gerrymandering.

So the question recently raised was this: how do we make Sustainability innovation more, well, sustainable?

One enormously powerful influence we identified at these axial moments are the behaviours and attitudes of the different actors and agents in the room.

The first step was to try and create a really simple framework and a lens through which to view those actors and agents: and in such a way as to be able to inspire and help them marshal the innovation through.

The people involved seemed to fall into two broad camps of behaviour and attitude.

It was this simple observation that formed the basis of a recent plenary and workshop on Sustainability Innovation that Thomas Kolster of Goodvertising and I hosted at Sustainable Brands in London

Entitled A Game of Two Halves; the plenary and workshop endeavoured to use the two attitudinal behavior types we observed to set up a simple playful framework in which we might help re-inspire and reenergize the process of sustainability innovation: most pointedly in regards to human behaviour and modes of thinking.

The inspiration for these two types and they game of two halves they ended up playing was drawn from anecdotal evidence, conversation and a little light stakeholder research.

The world of Sustainability seems to be populated by a kaleidoscopic constituency of vital minds

  • the green activist agitators, ice breakers & policy shakers of the likes of the Sierra Club and Greenpeace
  • the scientists, conservationists and behaviouralists from the myriad NGOs advising and supporting communities across the globe
  • the sustainability policy and regulatory advisors, architects and engineers who operate at the point where the private sector and the public sector collide
  • the particular and labyrinthine coder programmer and systems minds of IT and rock n roll tech geekdom
  • the lateral and populist storytellers and communications professionals who advise both corporates and government on sustainability communication strategies and campaigning
  • the HR professionals who are increasingly being placed at the heart of burgeoining Social programmes being designed to evolve from the inside out and the ground up of large corporates and public sector organisations
  • the corporate actors driving sustainability agendas to improve performance, mitigate risk, attract investent or embrace social responsibility.

Many of these actors and agents are rarely advocates of an over simplified Either/Or picture of the world, and most have traces of both polarities in them.

But it did seem that as things start to go wrong or seize up there is a human tendency to fall into one or other of the camps – and revert to the type closest to ones own nature.

2 halves

Thomas and I chose to identify and explore these Either/Or moments and the attitudes and behaviours that accompany them in a couple of ways

The first was that of Venus & Mars, with Thomas viewing the two types through the lens of couples counselling, viewing the barriers to innovative sustainability thinking and doing as requiring the navigational and brokering skills usually deployed by professionals trying to help Couples climb out of the morass of familiarity and astonishing contempt – someone adept and experienced at showing warring and stagnating couples how to embrace the best of each other.

With this in mind we asked people a simple question; what is the greatest barrier to sustainability innovation?

We collected some answers from the people in the room. We then asked them to define what they felt might be the best solution to those problems. We collected these.

We then had the pleasure of Sarah Greenway from B&Q who spoke eloquently and in heartfelt terms about some of her own challenges and feelings (un-surprisingly one of those people with both aspects ascendant in her).

And then we rolled in a rainbow grenade to see if we could unlock people’s minds further.

Taking the view that in fact as well as the innate issues of intimate self-realisation that Thomas had alluded were some more extant behavioural traits that we might explore and play with to help the innovation on its way.

And I chose to label those traits as Punk & Wonk – another simple playful way of creating a tension and point counter point framework in which to exercise the innovation process to create breakouts and breakthroughs in stagnating thinking.

Punk celebrates the liberation of explosive dynamism and chaotic fluidity: Wonk that of incremental revelation and structured illumination.

I believe that somewhere between their poles: between the anxiety-inducing anarchy of blowing stuff up and the pointillist particularity or relentless rigour lies a resilience strategy for those embarking on a process of sustainability innovation. A potential answer to sustaining Sustainability Innovation.

I used the genius of Bowie and Eno as an example of how even the most complementary and inventive minds need help – need to be compelled to take a different view to break through blocks and walls in their own and others heads.

Bowie, the master of relentless reinvention – the punk dude of many lives personas and faces – and Eno, the musical scientist, and king or algorithmic cadence utilized the inspiration of Oblique Strategies – a set of obtuse cards devised by Eno and Peter Schmidt – to break their own creative deadlocks in the studio.

I asked people to envisage that we might create our own set of Breakout Strategies for Sustainability Innovation in much the same way, using the dualities of either Venus & Mars or Punks & Wonks to aid that inspiration.

We then asked the participants in the room to take one of the solutions we had identified and one of the traits = preferably the one least like themselves – and see if the application of a Punk or a Wonk mindset had helped them see anything differently.

I will leave the rest to David Harding-Brown in his write up of the session – far more complete and objective as an observer than either Thomas or I would be.

What we have left is a charming and playful set of inspirations rooted both in punk and wonk perspectives and some hybrids to help people in the fire storm of sustainability innovation.

Everyone needs to break out of their hole and reignite the minds we need to re-inspire the innovation that just might stop us all going up in a plume of consumption smoke!

Discuss.

See the links below to the event from the SB site including david Harding-Brown’s piece

http://www.sustainablebrands.com/news_and_views/organizational_change/david_harding-brown/sb14london_innovating_sustainability_-_game

http://www.sustainablebrands.com/digital_learning/event_video/collaboration/innovating_sustainability_game_two_halves

 

 

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