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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

 

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The Blue Brick Road – the perilous journey of managing long-term Sustainability truths into short-term Profitability businesses.

13 Wednesday Nov 2013

Posted by Thin Air Factory in Uncategorized

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authenticity & belief, Behaviour Change, believers soldiers & cynics, brand guff, corporate cowardice, Create & capture Value, dreamers, Identity, managing the room, operational disdain, people powered, politics of desire, profitability from sustainability, purpose beyond profit, the tyranny of positivity, wizard of oz

Screen Shot 2013-11-13 at 15.04.45f

Picture the scene: the Conference Suite (named after a president of some distant windswept yet troubled corner of the world for a reason no-one can remember) in a contemporary style, world-traveller hotel (reasonably priced, and reasonably placed at a point where the ley-lines of plane, bus, rail and car intersect – substantial rooms, fragrance in the lobby, free wi-fi in the room and all off-set by the set-price ‘graze & boost’ conference working-lunch special)

The Conference Suite’s windows look out onto the car park, which is pretty full – top of the range saloons mostly and the odd sporty number show that there are some bosses attending the 3 conferences running simultaneously – or their advertising PR, and media agencies have been invited.

In the conference room sit 6 espresso-sharpened, buffet-boldened execs – the words ‘Blue-o-sphere Innovation’ illuminated on the touch screen outside the double teak-look doors revealing the conversation within.

We meet them at a perilous ‘pregnant-pause meets Spaghetti Western stand-off’ moment. Something has been said that we are not party to. But it is a moment of consequence.

Doug ‘Ozzie’ Oswald – CEO – sits side on to the conference table, hands behind his head and leaning back on the sprung chair to reveal the nascent underarm salt lines he is renowned for. He looks down the table into space, looking through and past Dorothy in search of an answer.

Doug is both Believer & Cynic – ‘Ozzie’ (his nick-name due to his Black Country accent, and his love of 1970’s heavy metal played loud in his petrol head sports car) believes the business has to embrace bluer thinking, smarter technology and more engaged employee culture because a) he read an article on it in HBR b) it’ll big him up in the legacy department and, most helpfully, c) it will save them a shit load of money which will set the capitalization of the business at a nice level come earn out time. But he feels a powerful need to denigrate all this fervent sustainability thinking. The ultimate saint and sinner, his conscience struggles with the fact that on the one hand the business and he are inextricably linked at a DNA level; but on the other he struggles to give a shit frankly, being only one year off his earn out. He is very tech savvy, and loves kit, but this is a simple smoke screen to hide his terror and confusion with the progress of life  – and its impact on his dreams of a small quiet life carp fishing.

Dorothy Scarperosso – MD – sits at the far side of the table opposite Doug, one hand playing with a loop of hair while jabbing a smart phone and i-pad simultaneously– to her left sits The ‘Vitsch”, to her right, Bob ‘Sleeps Tonight’ Lyon.

Believer – she’s on a journey to future-proof her business – shaking the tree with root and branch reforms at every level – systemic, operational, human resource and product innovation – and all done with her killer intellect and signature scarlet Louboutins to the fore. Dorothy came to the world of sustainability champions through the back door (the front one being not exactly seductive or magnetic to the average person) and entirely by accident. To save money and too much effort on the part of anyone senior, an employee engagement initiative got dumped into the ‘who cares?’ action tray along with an energy mitigation drive and a small product upgrade launch. Quickly rolled together and given to the employees to play with, POW it was an instant facebook success. One small moment of truth and a slice of proof later, and she was a believer. Staunchly, and against all the odds, Doug’s recidivism and a couple of other notable female bosses points of view, Dorothy is a great champion of flexible and home working practice to engage and retain more women at a higher level: for which her catch phrase currently is – “there’s no place like home”. Run-ins and clashes are regular but she knows where she’s going and her irrepressible optimism keeps her punching through.

Bob Lyon – COO –  sits slouched, short-sleeved arms crossed both defiantly and defensively across his chest.

Cynic – He usually can side-step the green tree hugger bollocks that comes with sustainability wonks and activists at the factory with ‘I’m busy making stuff so we can sell it’ deflections. He doesn’t like what the expense of a production line conversion to an innovative refill packaging line – and improving some of his supply chain partnership management is going to mess with his figures short term and ‘Ozzer’ (his derivative)  is watching his projections like a hawk. Most problems are salved with the easy familiar masculine ‘phwoar’ of golf bravado.  BUT Bob has a dirty little blue secret – he has been teetering on the verge of a Damascene moment for a while now. He is struggling to find the courage to face his inner hippie – and admit he’d follow Dorothy over broken glass. And no-one has yet noticed that his Jag’s been dumped for a Prius.

 Li Tin Gei – R&D Innovations Packaging specialist – is slumped across the conference table amongst files and scattered sticks, furiously tracking back through his Time Machine application to find the presentation where he is certain he emphatically stated the long term impacts of the packaging recommendation in regards to mitigating vulnerability to global oil prices over three years.

Dreamer – Li is  strangely whimsical for a biochemical engineer and uber-nerd. He believes everything in the visioning presentation is great and should happen immediately regardless of cost to the business. Bob can’t help sneering at him, not because he dislikes him (though Lin’s buttoned up purposefully nerdy looking gingham shirts irritate him a lot) – Bob just despises ‘fluffy-ness’ in a tech guy more than in than anyone else – “you’re an engineer for chissakes. Cut the fluff” – But Li is one of Dorothy’s favourites, so Bob likes him in her presence. Li is a hyper-rational believer in everything blue but lacks the heart to really make anyone, let alone everyone take notice

Jean Scayrcro – CMO – She teeters at the far end of the table next to Doug – so near yet so far. Her eyes are fixed on her hero Dorothy, her body language coiled and ready to strike if needs be.

Soldier – Jean’s nickname is Jean Scayr-Cro-Straw-Pants – as she spends her life getting her team and her agency partners to build endless straw man presentations but to little avail as she ends up writing them herself. Her presentations reveal that she runs her own little off-set strategy – balancing the lightness of her more academic intellectual rigour with a substantial instinct for how to turn some of the ‘cool stuff’ that Li’s team are doing into some great storytelling. POW! She’s no visionary but she’s got heart and the marketing nous to know exactly how to use cool stuff to grab some extra brand bucks for the business – give her the tools and the info and she’s unstoppable.  But she’s on a professional iceberg in a warming sea – enjoying an ever-reducing platform with the CEO. And a slightly suspicious relationship with Rick from the ad agency isn’t helping! The ‘Vitsch’ will see to that.

Mike ‘the bitch’ Vitsch – Head Of Global Brand – who currently seems to be almost hovering in the middle of the conference room table. His perfectly moisturised lips are drawn into his signature ‘wicked’ grimace, the product of continuously having to disguise a smug smile behind a picture of faux pinched contemplation or concern.  The air that floats between Dorothy and Mike couldn’t be less poisonous. He needs the next three minutes to go his way

Dreamer of his own success,  Believer in his ability to deliver it, Soldier to his own cause and Cynical user of anything to get it, Mike takes no prisoners. An ex- management consultant and Fund manager, he eats Bob for breakfast, and makes Doug very nervous, in both a good and a bad way. Though scary, he has a very vulnerable though utterly sociopathic side which he tucks neatly away from sight behind pressed Armani and razor sharp Prada boardroom shoes. Speaking of which, Dorothy’s are the ones he wants to step into – and he will make it happen or die in the pursuit! With his therapist and his life coach on fast Dial, Mike plays the Blue line when he needs to and then slips off and debunks it in every direction at every dinner party and junket he attends – but always in an ‘I couldn’t possible say that’ manner. He adores all things shiny and sexy, and thinks that’s what everyone buys. Not geeky scractchy knit your own yoghurt worthiness. Conscience is just not a gene pool imperative in his beautifully tooled and exquisitely embellished brand book world.

Welcome to a world of BRAND X vs. BRAND S Diplomacy – a world populated by Dreamers Believers Soldiers and Cynics and the perilous strategies of managing long term Sustainability truths into short term Profitability businesses.

Watch this space for more on how a profiling-lite approach called ‘Dreamers, Believers Soldiers & Cynics’ might help you navigate the journey more efficiently and insightfully, turn a more interesting social strategy from the inside out and ground up – and have some fun along the way

 

 

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