How do you imagine the future of data sharing in healthcare or research?

Each day more and more data is collated. This data could have huge effects for healthcare and research if properly used. But will this knowledge be harnessed and used to its biggest advantage?

Will this knowledge be harnessed?

Will it be used to its biggest advantage?

There is a growing potential in sharing medical data but there is still much work to be done in gaining people's trust and encouraging them that it's the right thing to do: it's for our own good and that of mankind.  Some people may be naturally less inclined or have good reason not to do so.  And rightfully so since there might be a few immediate drawbacks like getting scooped in research or illicit use of someone's medical data to discriminate.  We have a fear of being singled out, of being watched.
Are we willing to accept that data sharing might have some negative effects at the timescale of the individual for the sake of the greater good?
We need to encourage sharing of data, we need to promote the moral trust to think rationally and altruistically.
But it is our responsibility to share the benefits of our research to support greater public involvement to prove that the benefits outweigh the drawbacks.  If we can show that our data sharing is saving lives in the long run.
Convincing people is hard but if we share the good coming of data sharing in healthcare and research then we will be able to distil this positive message and we can guarantee a positive feedback loop.

Building trust takes years but only moments to tear down.  Internet companies such as Facebook and Google have deceived us.  Already people give out a lot of information unwittingly.  We would like to avoid this.
Scientific journals have deceived us: Eg recent articles about most research findings being FP.  Scientists are often much more cynical about science than people outside the field.

Ideally we would like people to know that there are giving information, we do not want to deceive them.  We should make it clear what their data will be used for.

For example Google is able to trace and predict epidemic based on search terms.  That's a good use of our data, one that benefits mankind as a whole.
However we don't like people making a profit at our expense by selling our data to third parties.

But if data is considered private then there will always be market for it.  Better an open market.

Nothing worse then breaking a promise: promising confidentiality or giving the illusion of confidentiality to later sell off the information to a third party.

If everything is in the public domain to start with then there is no need for this black market.

However this is where information sharing can help. Sharing information has had a huge psychological impact on our society.  I believe,  perhaps quite naively, that we are promoting a more open, honest and tolerant society, one were we have nothing to hide.  

Thinking in terms of utility. Bentham: the greater good.

Possibly we need to distinguish population data from individual longitudinal data.
We are scared of being watched.

Promoting scientific honesty, thinking in terms of utility and greater good

It's ok to be wrong.  And it's ok for things to be incomplete.  In fact sometimes we learn new things from a person's draft, about their way of thinking that are not obvious in the final product.  But it's in our nature to fear being single out as being wrong, as an outlier.  In fact we (collectively) learn more from when things don't work then when they do.  The important thing is to learn from our collective mistakes.

Simple when something works we don't need to fix it and so are less motivated to understand how it works.

I believe that the Wikipedia model shows that objectivity and scientific honesty prevails amidst dialogue. Open data encourages scientific dialogue. Complete transparency . Compare the performance of an athlete who trains by himself and one who trains with others.  There are many cases where competition drives progress but also cases where competition distracts from alternative roads less travelled, inhibits diversity and encourages lying and deceit.

Massive parallelisation of collection and analysis

It is pretty clear that everything needs to be parallelised/distributed.
Massively parallel collection of phenotypes.
Collating data efficiently.  Preserving anonymity.
Genetics risk factors will be updated on the fly.
Parellelisation makes consistency harder.

The objectivity of data, unlabelled data
Putting labels on things can be as useful as it can be destructive.  We've learned not to label ourselves, now we need to learn not to label our data.  The issue with data sharing is not so much the data itself but the interpretation of it, the label that comes with it which can be misleading.  For example products when you buy a product in the supermarket it comes with a detailed list of ingredients but not with a risk factor.  A recent example is 23 and me who were sued over their diagnostics.  It's one thing to collect the data, it's another thing to interpret it.  Over-dramatisation carries the risk of causing mass-hysteria.

 I believe we need to encourage data sharing without the interpretation of the data, or at least provide several interpretations of the data.   Every dataset should come with a disclaimer stating that the data is provided as such, that it came off the machine x, has undergone the following steps of QC.
There are many levels of raw data.

Many possible data labels, no label is permanent, many data interpretations
Drowning in data, starving for information
In science there are often many competing hypotheses which, depending on the the data, have posterior probabilities of being true.  In the light of new data, these posterior probabilities might change or new hypotheses might emerge.
This is the increasingly popular Bayesian way of thinking whereby our beliefs are continuously updated in light of new data.

Although we have learned a great deal about genetic data in the last 20 years there is still a lot we don't know.  We have high-level conceptual models of genes, of how the immune system works, of how cancer metastasizes.  But in some cases we still have very little predictive power of how a disease will evolve, how efficient is a vaccination.

Jumping to conclusions to diagnosis for the sake of impact is one of the biggest problem  we are facing in research, lack of objectivity. So called expert judgments overuling objectivity.  Dismissing competing hypotheses, oversimplifying before enough evidence has been gathered, leaps of reasoning, favouring elegant solutions. People blindly following the opinion of so-called experts.  We need a minimum of trust which is the point of peer reviewing to establish of knowledge base.  Some journals are more trusted than others.

Keeping our options open
But what if we lack the expertise to analyse the data?  When do we chose to suspend our disbelief?  A more mundane example, say I bring my car to the garage for a road test.  Do I trust the mechanics diagnosis?  Do I consult a second opinion?

As long as we are allowed to question and have these options at our disposal.  We don't own the earth, we don't own our genetic code, we are merely borrowing it from future generations.
We are only transiently here but we have the chance of contributing to something that may outlive us all.

My naive hope is that the future of data sharing is a much simpler than the present. 

I believe (albeit naively) that humanity has come of age, that our tolerance, understanding, and scientific openness has reached a point where data can be put in the public space without fear of confidentiality, judgement or reprisal.

That we become as open about our genetics and medical problems than about our thoughts, religion, sexual orientation.  That these things don't become newsworthy anymore.  If anything genetics shows us that we are all exceptions, we all carry minor alleles which distinguish us from everyone else.  We are all genetically flawed in some way.  It's normal to be different, the mean doesnt' exist.

I see a future so simple that data sharing is no longer a newsworthy question, but my job is not to predict it but to enable it.

Around nineteen eighty-four

George Orwell’s (Eric Arthur Blair) “1984” can be interpreted as a very cynical story and fervent criticism of totalitarianism.  Yet it at it's heart lies a deeply philosophical theme, one of existentialism and solipsism.

  In the year 1984, the world is divided in three totalitarian superpowers who wage constant war on each other for fictitious reasons.  These three superpowers are Oceania (America, Australia, most of Africa and England), Eurasia (Europe, Russia and most of South Asia) and East-Asia (Japan, China, Mongolia, most of south-east Asia) are all oligarchies with an omnipotent and ubiquitous “Party” in power.

  The story of 1984 is set in Oceania which is under the control of “Ingsoc”, the english socialist regime, whose governing body is known as “The Party”.  The will of the Party is personified as “Big Brother”, a supposedly inspirational leader whom every member of the Party must revere and love unconditionally with a certain degree of fanaticism.

  Big Brother is one, he is ever watchful, he is powerful, wise and uncompromising.  He plays God in the microcosm of Oceania for he defines people’s reality, modifying the past as he please by altering records and destroying evidence.  People must see, think and remember what he wants them to.   Although the regime cannot directly control people’s minds through telepathy nor read people’s thoughts without observing telltale facial expressions, they manage to confine their thinking and reasoning as to deter the slightest impulse, the slightest thought of rebellion against the oligarchy.  And furthermore, they instill an incessant feeling of gratitude towards the Big Brother regime fuelled by hate for the enemies (Eurasia or Eastasia alternatively) of the regime.  The means by which this is achieved are purely psychological: constant surveillance, mindless propaganda due to the eternal state of war, the Spies, the Thoughtpolice, Crimethink…

  Paranoia is no more an illusion.  Any “unorthodox” behaviour is swiftly suppressed and the “culprit” is erased.  One’s existence is not only futile, it is irrelevant.  Since not only one's existence is denied, all trace of its is destroyed: it is as if he never existed.

  As all newly born members of the Party are taken in hand and swiftly brainwashed by Big Brother, the ideas of rebellion against the regime or freedom of will are not even conceivable by newer members of the Party.  For them, the Party, Big Brother are eternal and define reality.
  The mere concept of overthrowing the Party of destroying Big Brother can only come from the minds of those who know otherwise, who trust their own judgment over Big Brother’s deceit.  They are incapable to believe in what they do not see as true.  The Party adheres to the solipsistic view that there is no objective truth: reality is an illusion which exists in one’s mind and nowhere else.  Therefore, before man, before the regime , there is nothing, and after man, they will be nothing.  The Party chooses to regard as truth what one convinces himself of being true and nothing more.  Reality is therefore defined by the Party, and all must “double-think” their way into seeing reality as Big Brother their way into seeing reality as Big Brother choses.  Their opinion must be subdued to that of Big Brother.

  However this process is very difficult for those who are older than the regime.  Winston Smith, for instance, the “hero" of the story is not able to and unwilling of tricking himself into double-thinking.  He, unlike most, is not stranded in the world of Oceania and Big Brother but has a link with the outside.  Winston Smith, has a precious link with the past for he possesses persistent memories and which are in some mysterious way more real than the present.

  Winston knows that reality might be perceived by one’s mind but is actuality exterior to it and exists in itself.  Man might consciously chose what he wants to see, he might chose to live in a world of illusions, but reality will eventually catch up with him and the truth will be uncovered in such a way that will not be able to convince himself otherwise.

  When that time comes he can either embrace the truth and repent or he can disregard it because it is against his interests.  Whatever his choice, it is from this moment  impossible for him to completely ignore reality.

  Winston Smith is one of these people, who chose not to double-think, not to believe that they can be two realities co-existing and that the Party’s is the right one, the true one.  He believes that two plus two make four and will always make four whatever the Party says.  That he is dangerous for the Party, because has higher faith in his judgement, his reason, than that of the Party.

  Eventually Winston Smith is betrayed by the man to whom he had confided, a supposedly rebel like himself who has ensnared him in a web of deceit and false hope.  He is tracked down by the Thought Police and the so-called “Ministry of Love”, a giant prison, where he suffers intense torture.  The only objective of the torture is to make him love Big Brother more than anyone by forcing him to betray everything and everyone he loves.  Winston resists as much as he can but his demise is the dreaded “Room 101” where he faces he is greatest fear.

  And so the individual is nothing against the regime:  he is crushed, brainwashed, and finally dies without the slight remainder of his past life, the smallest proof of his existence.  For in nineteen eighty four, the regime defines not only reality but existence...