Mine This Big Data!
Ethics Would Be Good Especially With Patient Health Data
I’m declaring war on big data and I’m looking for recruits — interested?
You can enlist and fight from the comfort of your home — or wherever else you sign in, log on, search and surf. Just a few minutes of your time and you will be a fully trained member of the resistance ready for highly satisfying acts of sabotage — no tech training required but creativity helps. Dear prying eyes — hold the battering ram — it’s all legal.
Here’s the plan: at least once a day go on Google and search for things like “which fruit is best to eat while having sex?” or “what do I do if my half-alien step-child wants to return to his home planet? ” Try filling the search bar with a host of completely unrelated symptoms and assorted words like “fungus bloating dislocated shoulder excessive hair loss crooked big toe excessive hair growth middle finger eyes stuck shut tomato paste” Don’t be worried/surprised if some ‘medical’ websites pop up with a diagnosis — it happens.
Your mission, should you chose to accept it, is to help fill the airways with ads for fruit salad cups that ‘won’t stain the sheets’ and ‘all natural anti-fungals that grow hair while removing it….’
If you are super tech & privacy savvy feel free to skip this part — but for the sake of people — like me — new to the world of personal information exploitation: data is apparently the new oil; a comparison that is apt not only because it captures the enormous amount of profit a few are, and plan to continue, making off it, but also because it communicates the potential long-term and potentially irreparable harm wholesale digging and ‘delivering’ of it could cause. This is especially worrisome since the new oil barons seem to explore and exploit where and however they want without much regulation or oversight. Google, Microsoft etc. collect a great deal of data on their users, (i.e. much of the world) and in so doing turn us into unwitting harvestees.
And while, like every CEO/spokesperson of every corporation ever, they claim their intentions are Nobel Prize worthy — the truth is often way more sketchy. Some browsers and search engines offer better privacy than others (not meant as an endorsement — just example). Knowledgeable people have outlined how to build a defense — which is important.
But this is war and we (meaning ‘I’ for the moment — I’m declaring my anti-monarchist appropriation of a historical relic’s pronoun) are sabotaging their ammo dump.
We are a tiny — symbolic if not significant — piece of a larger battle for privacy and the right not to be ‘consumers’ 24 hours a damn day. We are reclaiming territory called human.
But in order to plant our homemade, trademark free flag we have to spike the data those greedy bastards collect and make it worthless; offer them meaningless bits of information thus, eventually denying it any commercial value.
Perhaps I should take a moment to explain how I ended up in my camo PJs taking aim at the mega maniacs.
Up until a few weeks ago I was just trying to get along in this world, hoping that, when I eventually leave it, I will have done slightly more good than harm. Then big data screwed with my life.
Tiny Bit of Background:
A number of years ago I got sick– sick, sick. See, now, as a result of what has happened, writing that bothers me, because as much as I’m fine with sharing the information with you, someone out there is mining this with the aim of exploiting it for any number of self-serving, and likely contrary to my, the public’s and/or science’s interests.
I have an autoimmune disease called Polymyositis — myo = muscle, itis = inflammation and poly = ‘you are so f**ked — cause it’s everywhere.’
It makes muscles weak — not, oh I’m tired weak –I can’t stand/breathe/swallow weak.
Not For Profit Nixed
I started feeling better and decided to volunteer for a program called Patient Voices Network (PVN). There are a confusing and ridiculously large number of buzzwords with patient attached to them — another nasty infection caused by the contaminating presence of business–‘patient-engagement — patient-centered — patient-centric ’ — they all mean different things depending on the motivations of the owner of the tongue they roll off of.
After 15 years of advancing health care improvement and patient engagement in B.C., ImpactBC closes its doors on…www.impactbc.ca
At the time I joined, PVN seemed to mean people with direct experience with the medical system, either as patients or as family members of patients, participating in committees, working groups, task forces or just providing feedback with the aim of improving health care. I volunteered because no one was profiting from this except, hopefully/possibly, other patients.
And then one day — September 25th- we, (this time meaning some 700 or so volunteers across the province of British Columbia), received an email informing us that the British Columbia Ministry of Health had awarded the contract, not to the local non-profit ImpactBC that had run it since it’s inception in 2010, but to British multi-national Deloitte. (Without this funding ImpactBC was forced to close 5 weeks later.)
Visuals are important — so picture this: Volunteers represent all age groups, including many seniors. The people I met at PVN are the kind of folks who chase after you for six blocks to deliver the twenty you dropped then smile and tell you ‘it was no problem at all’, even though they are now late for whatever it was they were going to. Enter stage right — a multi-national corporation and not just any multi-national — a mega multinational Fortune 500 corporation.
I was struggling to understand why Deloitte would want to take charge of serving tea at our meetings. I also couldn’t figure out why my government would think ‘cuts consultants’, would be better suited to develop the kind of personal and trusting relationships necessary for a program like this to function.
Something didn’t make sense to me. Sort of like some things in the Back to The Future series– which, apropos of nothing, also proves that movies don’t have to make sense for me to watch them — repeatedly. (Data drop — or was it?)
There are a variety of ways to cope when things don’t make sense in the real world. My preference is to rip the sucker apart until I find the DNA marker that explains it. So I, and others, started looking.
Here is what we found:
Money Loves Company
We found out the husband of Attorney General, Suzanne Anton was, in 2012, managing partner of Deloitte Vancouver and in 2014 declared income from Deloitte Management Services and Deloitte LLP .
In a province with a government that triple deletes emails relating to the missing and murdered women on the ‘highway of tears’ and shreds enough documents to confetti a year’s worth of weddings, that alone didn’t seem remarkable. Then we remembered the MoH talked about selling everyone’s health data before.
In this case the province wasn’t selling, it was paying Deloitte.
We kept digging.
I believe I heard that Deloitte had in the neighbourhood of $55 million in contracts with BC government. They donated around $54,025 to BC Liberal campaign, which, if correct, would mean for every dollar Deloitte donated they ‘secured’ 1,000 times that in government contracts.
Deloitte repeatedly getting public contracts struck us as a little odd since Deloitte doesn’t seem to be very good at fulfilling many of these contracts. In the case of UK’s workfare, Deloitte was paid $774 million pounds ($1,559,234,656.44 Cdn) to manage a program that not only resulted in tragedy at the time but was also a contributing cause of the 213 % increase in hate crimes against the disabled in the UK. The program was the government’s idea and it is ultimately they who must wear it — but should anyone associated with it be hired to run a patient engagement program?
Deloitte Gets Around — A lot
Pharma likes sick people the way Dracula likes necks.
Their close relationship might explain Deloitte’s desire to open a chat window with me and other patient volunteers. It also, however, made a lot of volunteers want to close it. To put this in perspective, to many of us with chronic illness, big pharma is to health what an arms dealer is to peace. We know we need them but think you are a bloody fool if you trust them to negotiate an arms treaty.
I am alive because of pharmaceuticals – I immunize – not one of ‘those people.‘ The problem is not the science – it is the bottomlessness of the bottom line.
Still even with all we knew, it seemed there was something missing — unfinished code.
And then through some random series of links I landed on the page of one of Deloitte’s many, many heirs — Converge Health (you need a flow chart and a very large wall to keep track of Deloitte’s companies, holdings, interests and divisions — and then you’ll need a few football fields to lay out all the logos of its clients).
If you scroll down to the bottom of this page and work your way up you get a working timeline of Deloitte’s new health data mining ‘tool.’ In 2012 Deloitte acquired Rombinant, a health data ‘warehousing’ firm. In 2013, they teamed up with Intermountain Healthcare and launched their new product OutcomesMiner at the Drug Information Associations Conference. Interesting choice of venue and audience n’cest pas?
The model discussed in this article, involves providing data analysis to doctors, hospitals, vendors, manufacturers and payers — for a fee.
Isn’t that a tiny bit like mining a mountain and then making it pay for rocks?
And Deloitte has other private ‘health industry’ clients. Canada’s healthcare system has always caused the private ‘health industry’ to alternately salivate and scream. They carry on like a kid denied a chocolate bar in the checkout aisle of the supermarket. Only kids tend to calm down when they realize they aren’t going to get their way. Taking a cue from parenting advice, I think we should be firm, consistent and clear with companies like Deloitte — ‘you are not getting anywhere near my Canadian health care so sit down and be quiet.’
International Trade Agreements Are Apparently Rather Disagreeable
Trade Agreements: Seriously. Like that is just not something you expect to find yourself in the middle of while volunteering for a local non-profit helping a hospital to draft prep instructions for colonoscopies. Nonetheless, when a volunteer who was also a board member of that non-profit asked the Ministry about why experience working with the program and patients in B.C. wasn’t considered when awarding the contract, she was told trade agreements played a role.
Are local non-profits going to be competing with multinational corporations for government contracts to run what are supposed to be public programs?
Well that was it for me. Who in their right mind would volunteer their time to help make a Fortune 500 corporation richer? And this is health data. You don’t need a name on it for it to be invasive to my privacy and ‘valuable’ to those who turn physical agony into gold toilet seats for their toddler’s private plane. So when the Ministry told me that the names of anyone who opted out of working with Deloitte it was not nearly as reassuring as they thought it would be.
“Health care data is of particular concern for privacy advocates because it’s naturally sensitive, and it’s basically impossible to anonymise. When Page and others talk about analysing healthcare data “anonymously,” they gloss over the fact that, even without an individuals’ key personal details, health data can be quite revealing.”
Plot Twist — Turns Out Not a Lot of People Actually Want to Volunteer to Be Free Labour For A Multinational Corporation
Of the 700 plus volunteers who built this program — over 2/3’s refused to sign the consent to transfer their information from the non-profit to the Ministry of Health, severing their association with a program some of them spent years and hundreds of hours building.
That’s hundreds of people, not in contact with one another, not organized or mobilized by anyone but themselves, living in communities all across the province. You know what they say is at the heart of every cynic… well this disappointed idealist’s heart grew three sizes that day.
Realistic Semi-Happy Ending : We Fought City Hall (Provincial MoH) and Won!
Cool eh? It’s not often an assortment of strangers with little in common and no leadership or organization, manage to prevent a multi-million dollar deal that has already been agreed to, from closing. And it all happened in such a quintessentially Canadian way — polite letters between the opposition and government outlining their respective concerns, and hard, nothing glamourous about it, no time for any grand-standing, in the trenches work. People cooperated, sometimes awkwardly (that would be me), but always civilly (that would be everyone but me).
I’m pretty sure at this point the government is really hoping we’ll go back to whatever we did before we starting bothering them.
So not gonna happen. (Got an email from a volunteer/grandmother in which she deconstructs the government’s response after watching Merchants of Doubt on Netflix — really want to be there the next time someone tries to placate her.)
We aren’t done because there is lots left to be done. Some of us have questions. And it isn’t all happy. People lost their jobs, a non-profit disappeared — virtually over-night — and many volunteers who previously didn’t think twice about trusting the government with their private information, just aren’t feeling it anymore. Plus, now the government says it wants to review the program and bring it ‘in-house’ – something tells me that might not be a good thing.
The decision by the health ministry to cancel the potential privatization of the Patients as Partners program is a huge…bcndpcaucus.ca
We want to know why the RFP was written and awarded the way it was?
Did trade agreements factor in or was that just an excuse? If the former, which ones and what are the ramifications for other non-profits — and if the latter, what is the real reason this mess happened.
We also need to some guarantee that whatever information we provide now, won’t be sold off in the future.
So we will carry on.
Will You Join in The Crusade? (Cue Inspirational Music)
But I also wanted to do something more — something broader than Deloitte or this deal. Something fun but serious that says people won’t tolerate being mercilessly mined by those missing an ’N’ on their moral compass. Just one small thing that said: “ I know and so — no.”
Now you are armed and ready — go forth to Youtube and make playlists of everything you dislike as well as what you love . Be sure to include one or two truther-types. Please, please help me live out my fantasy of a boardroom full of perplexed analysts and strategists struggling to explain and capture the burgeoning conspiracy theorist market? Who knows we might see some fake moon landing diorama kits in stores by Christmas.
And if you notice ‘an article’ on one of the ‘lifestyle’ websites about coping with fruit/sex addictions or tips for supporting your half-alien stepchild through home-planet sickness — you will know you made that happen.
I am definitely not opposed to the collection and analysis of data. I understand its real value — I am just not sure my government, Deloitte and other sick-salesmen do. Which is why some of the problems in this situation apply in others.
First of all, PVN was not a health data farm, and I am not a crop to be picked. It was supposed to facilitate patient involvement in health care and while I confess I have not read every document coming out of Deloitte, (by the time you finish reading this 1,000’s more randomly placed ‘words’ will have been uploaded to their server), of all the endless links I did follow and read, I saw nothing that reflected the skills necessary to administer a program like PVN. The fact that Deloitte was anxious to jump in, and my government was seemingly similarly inclined, suggests to me that neither has any respect for, or grasp of, this fundamental distinction. It is not that these two things can’t occur simultaneously, they can. But they can not be done using the same consent because they are not the same thing.
Secondly, (pardon the soap-box, I promise it’ll collapse under the weight of my indignation anytime now), volunteering, with full consent and understanding, to share one’s health data to be used in the public sphere, is not the same as signing an unlimited exploitation waiver with a private, for-profit corporation that may or may not sprinkle some health benefits along their cash-collecting route to Cayman Islands.
It is just plain dumb that we are even entertaining going down this road without a full discussion about how to regulate and control the use of health data and, equally, how we prevent and punish its misuse.
The lesson of the mess made of PVN by this government is — ethics must come first. We need to have a big public discussion to flush out all the why and wherefores BEFORE we go any further.
At the moment we are tourists in 4″ stilettos walking along the edge of the Grand Canyon in the dark. It looks cool but it is stupid and dangerous as hell.
At one time, at least in theory, it was the government’s role to keep business in its lane. But the three lane road has become a two lane road. Rules and regulations that place people above profits; consideration for compassion and justice that demands at least the pretense of equity and fairness; acknowledging the value of a human life not represented or captured in dollars and cents; the necessity for public and universal to be guarded from and not smothered by the gluttony of multi-national greed — all these are passe for our governments.
It’s up to us — the people — we are in one lane , business and government is in the other — it looks hopeless but we have the paint and we can draw the line. A few of us just left a tiny dollop.
Go ahead — mine this big data. I’m targeting you