Ensuring equitable access to healthcare in the age of algorithms and AI

Yesterday, Dr. Peter Vaughan, chair of the board of directors of Canada Health Infoway, spoke at Longwoods’ Breakfast with the Chiefs.

After outlining the current state and future perspectives of digitization in healthcare, his main message was two-fold: 1. We are at risk of a “failure of imagination”, i.e. we cannot fathom all the possible futures that digital disruption might confront us with and hence fail to plan for their pitfalls adequately. 2. There is great potential for algorithms to be built in such a way as to solidify and deepen inequalities that currently exist in our system, and we need government oversight of such algorithms to prevent this from happening.

The first point is easy to understand, the second point may need little more explanation. Algorithms are used widely to determine what information is presented to us online, what choices are offered to us. We are all familiar with websites, offering us items we ‘might also like’, based on our past choices and based on what other purchasers have bought.

At a time when data from various sources can be linked to create sophisticated profiles of people, it would be easy for a healthcare organization to identify individuals that are potentially ‘high cost’ and to deny them service or to restrict access to services. Bias can creep into algorithms quickly. If people of a certain age, ethnic background or location are deemed to be ‘higher risk’ for some health issues or for unhealthy behaviours, and this is built into an algorithm that prioritizes ‘lower risk’ customers, then you are discriminated against if you share the same profile, no matter how you actually behave.

Discrimination is often systemic, unless a conscious effort is made to break the cycle of disadvantaged circumstances leading to failure to thrive leading to lower opportunity in the future. As Dr. Peter Vaughan pointed out, we in Canada value equitable access to healthcare, education and other public goods. We expect our government to put safeguards in place against discrimination based on background and circumstances. But how can this be done?

Private, for-profit enterprises have a right to segment their customers and offer different services to different tiers, based on their profitability or ‘life-time customer value’. Companies do this all the time, it is good business practice. But what about a private digital health service that accepts people with low risk profiles into their patient roster, but is unavailable to others, whose profile suggests they may need a lot of services down the line? Is this acceptable?

And if the government were to monitor and regulate algorithms related to the provision of public goods (such as healthcare) who has the right credentials to tackle this issue? People would be needed who understand data science – how algorithms are constructed and how AI feeds into them – and social sciences – to identify the assumptions underpinning the algorithms – and ethics. Since technology is moving very fast, we should have started training such people yesterday.

And how could algorithms be tested? Should this be part of some sort of an approval process? Can testing be done by individuals, relying on their expertise and judgement? Or could there be a more controlled way of assessing algorithms for their potential to disadvantage certain members of society? Or a potential for automation of this process?

I am thinking there may be an opportunity here to develop a standardized set of testing tools that algorithms could be subjected to. For example, one could create profiles that represent different groups in society and test-run them as fake applicants for this or that service.

Also, algorithms change all the time, so one would perhaps need to have a process of re-certification in place to ensure continued compliance with the rules.

And then, there would be the temptation for companies to game the system. So, if a standardized set of test cases were developed to test algorithms for social acceptability, companies may develop code to identify and ‘appease’ these test cases but continue discriminating against real applicants.

In any case, this could be an interesting and important new field for social scientists to go into. However, one must be willing to combines the ‘soft’ social sciences with ‘hard’ stats and IT skills and find the right learning venues to develop these skills.

Much food for thought. Thank you, Dr. Peter Vaughan!

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Doing Business on a Global Scale

Today, it was reported that “Chinese court finds GlaxoSmithKline guilty of bribery”. This raises the question: Is the Chinese government really cleaning up? Or did they just not bribe the right people? Why is GSK in the spotlight and not others?

Having lived and worked in Russia, and frequently discussing their country’s state of affairs with friends from Columbia, Iran, China and India*, bribery and favouritism seems to be a fact of life in a number of countries including BRIC and the Middle East.

Most people here in Canada and presumably also in the US would agree that bribery is bad. In fact, the US has very strict laws forbidding US businesses to engage in such practices abroad. I agree that one should uphold one’s moral standards in contexts which challenge them.

But I’d like to add a word or two to explain why bribery is so rampant in some countries. It is not a lack of business ethics, as one might suspect, but rather a reaction to the conditions under which businesses have to operate in these countries. What is really lacking there is the rule of law.

For someone who has lived in the ‘West’ all their lives, it is difficult to image what the absence of rule of law looks like, and what it does to you. Imagine business where you sign contracts but you cannot enforce them. Where you accumulate wealth, but where it can be taken from you at any time. Where you apply to the authorities – police, judges, lawmakers – for help, but they do not serve you. All and everything you do, your success and failure is dependent upon knowing the right people, forging the right alliances, and often money changes hands. If you run a profitable business, others want a piece of the pie, or they won’t let you do your work.

If you make the wrong move, if you get in the way of someone more powerful than you, then you go down – accused of bribery, tax fraud, unsanitary working conditions etc. etc. Maybe you are guilty, maybe you are not. If you are lucky, you can pay your way out of it. Otherwise, you may end up in jail like Mr. Khodorkovsky, or worse.

Yes, people pay bribes and they should not be doing that. Yes, people defraud on their taxes and they should not be doing that. Yes, people let their employees work in unhealthy and unsafe conditions and they should not be doing that.

However, those that get singled out and publicly blamed for their wrongdoing are not necessarily the worst culprits. They are simply the ones who did not play their cards right, who ticked someone off. So how did Glaxo get into this mess?

* Thanks to Toronto’s multicultural community!

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The Right to Choose

Recently, the CBC reported on a ten-year old girl, Makayla Sault, who was diagnosed with acute lymphoblastic leukemia, a cancer of the blood. The girl experienced severe side effects from the chemotherapy she was receiving and decided, together with her parents, to discontinue therapy.

Now, the Children’s Aid Society is getting involved with the intent of convincing the family to complete the course of therapy. The parents and the community they live in also fear that Makayla may be forcibly removed from home and given therapy against her will.

Do parents have the right to choose whether or not a potentially life-saving treatment is given to their child? Does the child have a say in this decision? Does the state have the responsibility to act in what is perceived as the best interest of the child, against the parents’ and the child’s wishes?

Let’s consider all the factors.

Deadliness of the disease. The form of leukemia that Makayla has can progress very rapidly and lead to death within a few months, if not treated. If it was a slower progressing disease, would it seem reasonable to let the parents decide on the course of treatment?

Chance of cure. If treated, there is a high chance of long-term remission or cure for a patient with acute lymphoblastic leukemia. Some quote the likelihood of treatment success as 75% or even higher. How does this information influence your view on the case? Does the parents’ decision seem responsible? Should the state step in?

What if treatment success was estimated at 50%? …at 30%? …at 10%? How would this influence your view on whose right it is to decide what to do? With a low chance of remission or cure, would it seem reasonable to allow parents to, basically, let their child die without having to go through the agony of chemotherapy?

Cultural context. The news coverage focused in on the point that Makayla and her parents belong to the New Credit First Nation, based in Ontario. Her family decided to try traditional remedies instead chemotherapy, and their local community has shown great support for their decision. The interference of the Children’s Aid Society is seen by some as another attempt of a government agency to take away native children, as had been done during the era of forced residential schooling.

How does the cultural factor influence your view on the case? Does being First Nation give Makayla’s parents more of a right to decide her destiny than being of Irish decent, being Jewish or being Iranian? What if the family belonged to a religious group that was viewed as being ‘extremist’? Would you feel the same about the case or different?

To what extent is the state responsible for the well-being of our children, and to ensure their well-being in the face of parental opposition? Laws and mechanisms to protect children against abusive parents certainly seem appropriate. How about protecting children against well-meaning but ill-informed parents? How about protecting children against well-meaning, well-informed parents who adhere to a different belief system? Difficult decisions.

Old World, New World

This is not about market research. When I woke up last night I had a vivid memory of standing outside a door in an apartment building in Germany. There was the door, thickly painted wood, and the doorbell that I was about to ring. The stone floor cold under my feet, grayish-white speckled, sort of like marble, but definitely much harder than marble. Quiet, cool air in the house, and faint noises from playing children in the courtyard. A few steps down, a landing with an old double window. The window sill about 50 centimetres wide, it had some potted plants of the durable, all-season nature.

So many times I have been to places like this, stood outside of apartment doors, slightly apprehensive. The setting evokes a range of associations. The building as a microcosm. People have lived together for many years. Someone lovingly waters those plants, and dusts them off every once in a while. The floor is kept spotless, and I am sure there is a schedule posted somewhere, that tells which party is responsible for cleaning which week.

Corridor German House

A place of comfort. A place of confinement. Long-standing relationships, set ways, ancient enemies. There probably is a lady on the third floor who bangs a broomstick against her ceiling every time the family above her is audible. The couple on the ground floor always gripes about people not cleaning off their shoes properly and trudging dirt through the house. When kids talk loudly on the steps, someone will stick their head out their door with a disapproving look.

 

Fast forward to Toronto, Canada. First of all, a lot of people here own their own home. And not just rich people. Many single-family dwellings are not more than ten, twenty years old. My house was built in the 1940ies and is considered ‘old’. Having your own house means a lot of things. It means making as much noise (inside) as you want. Children jumping down the stairs, jelling, turning your music up. There are no rules to follow (well, very few), no customs to adhere to. Wear what you want, talk however you want, cook whatever you want. You are free to strike new relationships, don’t have to follow ‘what is proper’. What is proper and acceptable is negotiated every single day as people of different cultural backgrounds mingle and co-exist. Make no assumptions about others – speak to them and see what they are all about.

Townhouse Canada

This place is new, feels new. The depth is lacking, the ties woven through centuries (unless you go into small towns and more traditional parts of the country). It is a country full of opportunities. You have a good idea, you can get things done, we can benefit from it, you’re in. Don’t worry if your email contains grammatical errors, if you speak with an accent. Here in Toronto, most people are from somewhere else.

Your house is a blank slate. Make of it what you want.

Disclaimer:

I realize that I am writing this from a particular vantage point (as one usually does!). In Canada, there are many people who do not have the same opportunities as they have been open to me. If you arrive without language skills (English / French), without family connections and without financial backing, getting a foothold and making use of opportunities can be tough. However, I argue that the opportunities here are still greater than if you were to arrive in Germany with the same skill set and resources.

Conclusion:

Germany and Canada, both sets of circumstances can breed great things. Born out of the freedom to dream large or out of the necessity to come up with creative solutions in confined circumstances. Good luck to you all!