Seizing Hope – An Anthropologist’s Perspective on a Movie Screening

Last night, I attended a screening of ‘Seizing Hope – High Tech Journeys in Pediatric Epilepsy’ at the Peter Gilgan Centre of Research and Learning at the Hospital for Sick Children in Toronto.

The evening was remarkable through the presence of a girl with epilepsy and her mother. I noticed them right away when I came into the auditorium and saw the girl in her wheelchair. I thought “Ah, a patient” and walked on.

Being an anthropologist by training and a market researcher for Canadian pharmaceutical companies and someone who does not spend much time in academic settings any more, two things struck me as remarkable in the set-up of this event:

Everyone was wearing a mask – “of course, we’re at a hospital” I thought.

Everyone in the auditorium had a microphone on their desk and the house lights were on the audience, whereas none of the panelists upfront had a microphone and no lights were illuminating them. I wondered whether this was a glitch in setup or reflective of the medical professionals’ attitude – “it’s not about me, it’s about the patient”.

The movie ‘Seizing Hope – High Tech Journeys in Pediatric Epilepsy’ which follows four families in their journeys leading up to and after getting a neurostimulator device implanted in their child’s brain, was both informative and touching. The most touching moment for me was when one of the mothers describes how her then four-year old daughter first got epilepsy. She lost the ability to walk, talk, deteriorated back to baby status and no longer recognized her as her mom. Any parent can feel the heartbreak that that entails.

I had seen an epileptic seizure before, but I did not realize the profound impact that the disease has on those affected, including families. This thoughtfully and gently composed movie is highly effective at communicating this. In addition to introducing new technologies that have the potential to help people with drug-resistant epilepsy, it really brings home the dire need for treatment and the equally important need to support families in their support of the patient.

However, real life is an even more effective teacher than any movie can be.

As the mother in the audience who had been in the movie was invited to the front to be part of the panel discussion, it was clear than her daughter also wanted her place in the spotlight (which wasn’t actually turned on, as mentioned before…). She walked up to the moderator and said hi, …and continued to make comments to her mom, the doctors she knew, her family members in the audience, and did not want to sit back down and listen. While the movie had talked about the impact on families, watching the family try to enable the panel discussion to move forward drew me and the other audience members right up close and into the experience.

But that was not all.

Towards the end of the event, when the girl had actually sat back down with her grandmother, she had a seizure. Her family, including her younger brother, immediately sprang into action, assisting her and dealing with the situation like the experienced support team that they are.

While most of the audience members turned to watch the event, I directed my gaze towards the pediatric nurse, neurologists, and neurosurgeons at the front. Clearly, they were torn between their assigned roles as panelists to wait and continue the discussion and their instinct as healthcare professionals to jump in and help. Several got up and sat back down again, struggling with the decision. A couple called out ‘Are you ok?’ to the family. Finally, one, the moderator, walked over and assured himself that the family was ok and able to cope on their own with what was occurring.

This cluster of family members around the girl in peril – their expert handling of the situation, from the oldest to the youngest person – this brought home more than anything to me how epilepsy affects lives.


  • Doctors wear many hats. They are first and foremost caregivers, focused on making patients feel better and keeping them safe. They are also scientists, exploring new frontiers of medicine. And finally, they are advocates. It became clear in the panel discussion that access to new medicines and new technologies can be a huge issue and doctors play a role in advocating to governments and sometimes even to the manufacturers of these medicines and devices to make them available in Canada.
  • A film about patient experience is a powerful tool for education and advocacy. The four families whose lives were shown in the film had requested that it would strike a balance between authoritative voices and compassionate portrayal, and it did. It was informative about the new technologies and the ethical dilemmas inherent in them, as well as successful at showing the profound impact of the disease and at fostering empathy for those affected by it.
  • First-hand experience is even more powerful than a movie. Watching the girl interact with her doctors and nurse, observing their responses, seeing the concern in their eyes when the seizure happened and witnessing the family’s rush to help was something that a lay person like myself is unlikely to forget.  

Why was I at that event? Just a desire to see something new, after a long pandemic-induced hiatus. I have done some market research in neurology in the past, and would like to engage more with companies in the field, so I thought it would be a good idea to get some more exposure to an area within neuroscience.

What did I learn that could benefit my clients? Patient voices can be powerful advocates for bringing new medicines and technologies to Canadians, but physician voices also play an important role.


A Good Day to Wear Orange

Last year on September 30, I met a client at a restaurant. I thought about wearing orange, but then I was afraid about making a political statement in a business context. He showed up in an orange sweater, and I felt stupid.

This year, here is a picture of my only orange piece of clothing that I just hung up outside of our house. Many things happened in the past twelve months.

I tend to be interested in off-beat topics. When something is a mainstream topic or cause, I feel less inclined to follow it. But sometimes life makes you sit up and pay attention. When a new wave of media coverage laps at your door regularly over a period of time, you may start to think: Perhaps I should read up on this a little. And so I did.

A ‘top ten books by native authors’ website suggested to me ‘Five Little Indians’ by Michelle Good, ‘Firewater: How Alcohol is Killing my People (and Yours)’ by Harold R. Johnson and ‘NDN Coping Mechanisms’ by Billy-Ray Belcourt. I also listened to a CBC podcast documentary series called ‘Kuper Island’, about a residential school located near Vancouver Island.

Here are some insights into what I have read and learned, and how it has challenged some of my previous assumptions:

This all happened fairly recently

One of the sentiments that non-Native people like myself harbour is: This is all long ago, why don’t ‘they’ get over it and move on? It is actually not. Not long ago. Some people in their fifties, like myself, had to attend residential school and suffered the consequences. Younger people have mothers, fathers, grandparents who were forced to go, and came back scarred.

What is ‘intergenerational trauma’?

I was already familiar with the idea that if you grow up with physical, sexual or verbal abuse, you are more likely to become an abuser yourself when you are an adult. I think this is well documented in research about child abuse. It was Michelle Good’s book ‘Five Little Indians’ that helped me understand how spending your formative years in the ‘care’ (or rather ‘not care’) of cruel, cold, vindictive individuals (i.e. abusers at a residential school) can make it hard for you to become a loving parent and a good husband/wife. You may have needed to burry your softer feelings so deeply that it could be very difficult to access them later.

The Native Voice vs. Native Voices

I recently came across an Instagram post that said, and I paraphrase: Native = At one with nature, peaceful, good and spiritual; Not Native = Cold-hearted, rational, militant, capitalist nature destroyers. I thought: Who is this person or organization who claims to be the ‘Native Voice’? If some organization claimed to be the ‘German Voice’ (I am German), I would find it highly questionable, if not ridiculous. Of course, there are many different opinions, and not just one way of thinking and being.

I think the diversity of native voices is under-represented in Canada. Very seldom do I come across reports of discussions within the Native community and differing points of view. Perhaps this is because the ‘Native Voice’ has just started to be given a space in mainstream media. Maybe down the road, when the ‘general public’ has become more accustomed to hearing about the impact that this or that decision has on a native community, will we be hearing more nuanced positions.

I think it would help to hear more nuanced positions and discussions within Native communities. More non-Native Canadians would become open to engaging with topics pertaining to indigenous well-being.  


I am still at ‘truth’. Just hearing and learning about what happened is something that not all non-Native Canadians have done. Our kids had a unit on residential schools in primary school, yes. But have we – you – really engaged with the topic? Do we – you – non-Natives really know anything about how Native people live on and off reserve?

I am impressed by indigenous people who have chosen a healing journey. Acknowledging past abuse and breaking from it to foster kind and caring elements in ourselves and bringing them into the world is difficult and takes courage. But it can be done. As Harold R. Johnson says in his book: “We can live any story that we want. We can live a drama – many people do – or we can live a romance, or a tragedy, or a comedy, or a mystery, or a fantasy, or a fable, or a fairytale. We can decide which story we want to be in and tell it to ourselves. The only limit on our ability to choose our own story is the story into which we are born. We have all been raised within a particular story. When we recognize it as story, it loses its power. This is especially true of victim stories. All of what we refer to as ‘society’ is the story that we tell ourselves about ourselves.”


For us non-Natives it would probably be good to at least read the 94 Calls-to-Action that the Truth and Reconciliation commission established about ten years ago (many of which have yet to be implemented). Take a look at the link below and think about how you want to live your own life:

Happy September 30!

Ukrainians are not Nazis

Today, an inflammatory article made headlines, claiming that a majority of Ukrainians were Nazis and it was therefore justified to kill them.

Clearly, the Kremlin is struggling to manage the PR crisis after war crimes committed in Bucha were widely publicised this weekend.

Ukrainians are not Nazis. Ukraine does not need denazification. The reason why denazification was necessary in Germany after WWII is because Germany invaded other countries and killed millions of people.

Ukraine did not invade any country. Ukraine was minding its own business. As any country, Ukraine has the right to ponder whether they want to join this or that organization, whether they want to adopt this or that policy.

Russia invaded Ukraine. The Russian Armed Forces are killing Ukrainian military and citizens who have taken up arms to defend their country, as well as many civilians who have not taken up arms.

Who would believe this Kremlin rhetoric?

Fighting against Nazis has a strong emotional connotation for Russians. It has made up an important part of Russian self-perception for the past 70 years.


Are the 20-year-olds who were cast to the front lines buying the story about Ukraine? Are their commanders? Are the more experienced career-military men?

I am German and 55 years old. My parents were children during the war. It was an important part of my narrative growing up, and my perception of WWII was shaped by what my grandmothers told me as well as what I learned in high school.

Do my children share that same narrative? No. Do my cousin’s children, who are young adults and living in Germany share this narrative? No. Do my Russian friends’ children, who are young adults and living in Russia share this narrative? No.

Nowadays, different narratives dominate our lives, define what is important to us.

Our impact on climate change, new technology, black lives matter, becoming an influencer, whether to work for a big company or a start-up, LGBTQ rights, work-life balance, whether or not government should be able to mandate vaccinations, how to preserve mental health during COVID lockdowns, etc. etc.…

…these are things that occupy our hearts and minds.

The ‘you-are-a-Nazi-and-I-am-duty-bound-to-kill-you’ rhetoric is an old rhetoric. The rhetoric of 70-year-old men.

Let’s not jump to conclusions too fast. The fact that the Kremlin (probably) hired an intellectual to twist the nonsensical Nazis-narrative into a coherent article says something about the Kremlin. It is flailing.

It need not say anything about the Russian military in Ukraine and about ordinary Russians.

Being successful in war relies on one side feeling that the other side is bad, and therefore it’s ok to kill them. Clearly, many Russian soldiers who were sent to Ukraine did not feel this way. Ukrainians were able to defend themselves, in part because morale on the Russian side was low and Ukrainians clearly are on the good side.

What is happening now is that some forces are trying to turn the enemy into monsters. That is the purpose of the article that the Kremlin just published.

My Russian friends, it is not worth your while to read this long publication, written to bring back the outdated worldview of old men*.

My Ukrainian friends, I weep with your losses. I am horrified with the horrific things you are witnessing. But I implore you…

…in your mind, do not turn the enemy into monsters. They are not. Russians and Ukrainians, they are just people. Some commit atrocities, and they need to be found and brought to justice.

Let us not get riled up by inflammatory media. Let us remember our shared humanity. Most people don’t want to do bad things.

* Hello, sorry, I just wanted to say I don’t like the ‘old (white) men are bad’ rhetoric in general – how can you judge a whole huge group of people like that. But in the context of this article it fits, and we all know which old man we’re talking about here.

Evidence: How much is enough?

I recently tried to identify why the back brake on my bike was not working well. After taking the brake system apart, I discovered that the lever at the handle was badly bent out of shape. Reason for malfunction found! Could not be bent back, brake system replaced, done.

When you are running an organization, your problems are much larger. Which technology should a company invest in to gain a strategic advantage? Which product benefits should be highlighted to consumers? Which new features will users want in a year from now?

One way of making these decisions is going by your gut, or your industry expertise. But it is probably good to collect feedback from the world outside your building and do some (market / customer / user) research.

How much evidence do you need to address your business problem? Will a few user interviews do the trick? Do you need a survey or conduct some ethnographic research? Or is the information already available somewhere, in your in-house data bases?

Let’s start here: The research you conduct should be proportionate to your problem. If you are pondering a major change in strategic direction, you should probably take your time, allocate a considerable research budget and think deeply about which data you want to collect and how it will help you make your decision. In contrast, if you want to tweak a minor feature, a few quick user interviews or a small scale A/B test may do the trick.

Also, research to support business decisions is not an exact science. There are no standards for how much research a particular problem warrants. There is always more to be learned, always some doubt remaining about whether the evidence was sufficient. How do you deal with that?

It’s simple! Time and money are the key factors in determining where to draw the line in your research efforts. Business decisions need to be made in a timely manner, and if the strategy session with the CEO is in six weeks from now, your research needs to be done by then. Likewise, if you have a research budget of $30k you cannot commission a project that costs $100k. Business research is conducted in support of business goals and business decisions, and these are constricted by time and resources.


Sometimes, you want to recommend that the company push back its strategy session by a couple of weeks to allow for collecting more comprehensive information about the customer. Or you lobby for an expansion of the research budget so that the size of the research better fits the size of the problem.

If you are unsure if the evidence will be enough, work from the concept of understanding. After collecting your evidence, do you feel you understand the customer enough to move ahead with your business decision? Or is there something missing?

If you feel your understanding is insufficient to make your business decision with confidence, go back, collect more evidence. If there is no time / no budget, frame your research results with caution signs, so that their limitations are clear to all.

Often, organizations develop a sense over time of what constitutes an acceptable amount of evidence. Some are happy with 4-6 interviews to explore fairly major problems, others want a large-scale study. Some don’t trust qualitative insights at all and feel that a quantitative survey must be conducted to support important decisions.

Usually, research results are not perfect. They do not meet all your insights needs. They do not include all possible stakeholders. But they provide valuable real-world guidance from users and customers that counter-balance gut-based decision making. Now, gut and industry experience and business sense still play an important role and insights stemming from research are only a part of the bigger picture.

Plus, when research results come back, their relationship to your business problem is usually not one-to-one: brake lever bent = brake not working = install new brake. Rather, they are subject to interpretation and often beg further analysis.

Research is no replacement for business sense, vision and leadership. These must have the last word and take responsibility for the future path of the product or organization.

Alzheimer’s disease – not cracking the nut (yet)

As an anthropologist, market researcher and consultant working with pharmaceutical companies, I follow trends in the medical field. Neuroscience is one of the areas on the rise. Expecting this field to accelerate in terms of drug development, I compiled a comprehensive database of Canadian neurologists and started engaging this audience. Alzheimer’s disease specifically is an area of great unmet need where a massive market is ripe for innovations, pharmacological and otherwise. I recently surveyed neurologists to better understand their perspectives. You can read the results here:

Neuroscience has received significant investment in the past decade.

In the U.S., President Obama launched the Brain Initiative in 2013 with a $100 million US dollar investment. He said: “Today, our scientists are mapping the human brain to unlock the answers to Alzheimer’s… Now is not the time to gut these job-creating investments in science and innovation. Now is the time to reach a level of research and development not seen since the height of the Space Race.”1

A similar investment was made in Canada with the establishment of the Brain Research Fund in 2011, a public-private partnership between Brain Canada and Health Canada. Its website describes the purpose of the investment as follows: “This visionary commitment by the federal government will ensure that Canada continues to be among the leaders in the global challenge to understand brain function and brain diseases.”2 Regional and local initiatives abound.3

However, while research funding is available, many worthwhile initiatives are competing for it.

Brain science is a diverse field; and neurologists often specialize in a particular area.

When I researched Canadian neurologists and potential participants for my Alzheimer’s survey, I noticed that only a subset of neurologists deals with Alzheimer’s and other dementias. Other significant specializations include multiple sclerosis, epilepsy, neuromuscular disorders, movement disorders (incl. Parkinson’s), migraine/ headache and stroke. The patient populations affected by these conditions are quite diverse, with epilepsy, MS, and migraine often affecting younger individuals and dementia, Parkinson’s and stroke primarily being diseases of the elderly.

While there are currently just over a thousand neurologists in Canada,4 only a subset of these would be relevant to a pharmaceutical company marketing a specific neurology drug.   

Many pharmaceutical companies have ventured into the area of neuroscience. According to the website Statistica, the top selling neurological drug products (2016 in the U.S.) are multiple sclerosis treatments, followed by medications for schizophrenia and bipolar disorder.5 Disease onset is typically younger for these conditions, impairment of day-to-day functioning can be significant, and patients remain on treatment for decades. Thus, they present interesting opportunities for pharmaceutical development.

Alzheimer’s disease is overdue for breakthrough discoveries.

But neurological diseases of the elderly have also received significant attention. Alzheimer’s disease, in particular, has proven to be a hard nut to crack. The last new treatment (Ebixa/memantine) came to Canada in 2005, joining the three cholinesterase inhibitors Aricept (donepezil), Exelon (rivastigmine) and Reminyl (galantamine). Neither of these agents are particularly effective in slowing down the progression of the disease. 

Many companies have tried to tackle the challenge of Alzheimer’s disease. Up until now, the path to a brighter future has been littered with unsuccessful clinical trials.6 Just this year, another five major flops joined the long list of previous attempts: Roche/AC Immune’s anti-tau antibody semorinemab, AbbVie/Voyager Therapeutics’ gene therapies, Sanofi/Denali’s RIPK1 inhibitor DNL747, and Eli Lilly’s and Roche’s amyloid antibodies solanezumab and gantenerumab. Biogen’s monoclonal antibody aducanumab is still in the running, but it faces an uphill battle to secure approval.

Will large pharma turn away, and leave the field to small, pre-clinical research companies for the time being? I believe there is reason for optimism about the future of brain research and the development of Alzheimer’s drugs specifically. Public attention and government incentives will continue to stimulate research. According to a recent article, 121 agents were in clinical trials for the treatment of Alzheimer’s disease at the beginning of 2020 (in Some are sponsored by large pharma and some by small start-ups. Even if beta-amyloid and tau protein turn out to be less promising drug targets than previously thought, with continued investment in this field, scientists are bound to come up with something eventually.

Non-pharmacological interventions deserve attention in Alzheimer’s.

In my survey among Canadian neurologists, one of the results that I found most interesting was their recognition of the importance of non-pharmacological measures.

Unprompted, Canadian neurologists identified supporting families, caregivers and home care as one of the top investment priorities to improve the lives of people with Alzheimer’s. When presented with a list of possible investment priorities, neurologists again picked ‘improved funding for home care’ along with ‘research into new drug treatments’ as the top two. Increased funding for long-term care facilities was perceived as less important.

Staying at home is certainly preferrable to living in long-term care, particularly under the current circumstances of the pandemic, and specific non-pharmacological interventions have the potential to significantly increase quality of life for Alzheimer’s patients.

One finding that intrigues and delights me is the brain’s storage of musical memories and the effect of music on the brain. It has been shown that memories of music persist while names of loved ones may already be fading into the background. The stimulation of those memories, and the participation in the making of music, can fill those affected by Alzheimer’s with great joy.

One of the projects supported by the Alzheimer’s Society of Canada is Voices in Motion, an intergenerational choir that brings together people with Alzheimer’s disease, caregivers and high school students.8 It combines the joyful act of singing with physical movement and social interaction. Based on findings from this study, researcher Dr. Debra Sheets, Associate Professor in the School of Nursing in Victoria, BC, will create a toolkit of best practices that can be used by other organizations who are interested in starting a community choir for people with dementia.

Early detection and screening are important, and AI may have a role to play in it.

For Alzheimer’s disease as well as for other areas of health, accurate and early diagnosis plays an important role in halting or slowing the disease before its effects become devastating. In fact, when my survey asked about top investment priorities, neurologists mentioned early detection and prevention unprompted. While there has been considerable research into biomarkers and brain imaging technology, more recently a number of companies have tried to harness the power of artificial intelligence for early detection of Alzheimer’s disease.

The Toronto startup Winterlight Labs uses AI to analyze speech patterns to detect cognitive impairment and other brain disorders.9 The company built a tablet-based assessment tool that is already being used in a clinical trial for an Alzheimer’s drug. Tech industry giant IBM, in conjunction with Pfizer, is working on something similar that presumably can predict onset of Alzheimer’s with 71% accuracy.10 Researchers at the Boston School of Medicine have developed a computer algorithm based on AI that can accurately predict the risk for and diagnose Alzheimer’s disease using a combination of MRI, testing to measure cognitive impairment, and data on age and gender.11

In Conclusion

Brain health is responsive to a variety of behavioural, technological and pharmacological interventions. Hopefully, research investments in Alzheimer’s will pay off in the not-so-distant future, and lead to breakthroughs that significantly improve the trajectory of this disease and the quality of life of those affected. I am keeping my fingers crossed.






6: List of recently failed clinical trials in Alzheimer’s disease

Roche/AC Immune:

AbbVie/Voyager Therapeutics:


Eli Lilly and Roche:






Post Disruption: Market research, what next?

Based on my personal experiences

Around 2011 the owner of the company that I then worked for came to Toronto and challenged the employees to go on social media. At that point, few had considered how important this was about to become for our jobs.

In the pre-historic days of market research, consumer data were collected by walking around the city, knocking on doors and interviewing people face to face. I caught the tail end of this when I started in market research in Russia (which is another story). Then, call centres became industry standard and most survey research was conducted on the phone. However, qualitative discussions were still held in person at focus group facilities.

In the 1990ies, online surveys took over as the main means of eliciting consumer data. Rather than finding consumers through random digit dialing, companies now started to build online panels of people who were willing to answer surveys. There was some concern about the representativeness of these panels at first, but it was soon put to rest when the considerable cost savings of this approach became apparent. Initially, research companies needed specific expertise, expensive software and sufficient server capacity to program, host and run these online panels and surveys. Quite a few even tried to develop their own software.

The 2000s saw a rise in self-serve online research solutions. The idea of software as a service (SaaS), and ‘freemium’ products such as SurveyMonkey made it possible for anyone to collect the data they wanted. It seemed no longer necessary to have any particular expertise or resources. At that time, I felt that many established market researchers were reluctant to open their eyes to the new reality. A few companies were blazing ahead, but the majority sat back and hoped it wouldn’t get too bad.

I realized myself around 2012 that things would never be the same again. When I had the opportunity to start my own business in 2014, I jumped with both feet into the world of SaaS, social media and startups, looking for ways to innovate and carve out a niche for myself in the insights community. I read Clayton Christensen and Eric Ries. I experimented with different tools and methodologies. I immersed myself into WeAreWearables Toronto, then a monthly event at the MaRS Discovery District, an innovation hub that offers services for startups and scaleups, and various other incubators and accelerators around the city.

Innovation was the buzzword, and also agile, real-time, lean and design thinking. The word disruption became popular in my neck of the woods a little later. Hard to believe that this was only six years ago. Now the word already seems a little tired. I feel that the dust of disruption has settled in market research, and firms have made adjustments.

Those who started off with the new technologies – for example Qualtrics, or the Canadian company Vision Critical – have probably done very well (not that I know their books). The traditional firms have incorporated various technologies into their offering. Many have social media analysis products. Some run large-scale customer feedback platforms for their clients. Some use virtual reality goggles for concept testing or shopper studies. Some offer online communities or hold virtual discussion groups. And to cut cost, many move business functions into the cloud, and outsourcing is widely used.

Whether this is sufficient to keep traditional market research organizations profitable, I don’t know. What I have learned in my own business is that I am still selling ATUs, segmentations, concept tests and one-on-one interviews. After the frenzy to be innovative and different, what clients seem to appreciate is my expertise. They trust me to know how market research is done properly, to execute the project for them, and to deliver them results that reflect a thorough understanding of their business questions, and in a form that adheres to their internal processes and requirements.

That’s why I stopped following the hype in the last couple of years. Disruption happened, but that was in the past. No amount of research automation can substitute understanding. And understand the customer we must.

But…I recently started renting a co-working desk at a business centre. I am with ease twenty years older than the majority of the other tenants there. So now I am back in a startup environment, and I see that while the hype has decreased, startups are here to stay for the foreseeable future. Businesses who are trying to disrupt various fields are numerous and, with the myriad applications of AI, far from done.

It will remain important to understand how new technologies fit into and change existing businesses. For example, I am intrigued by the anatomy of the Cloud, where servers are located, how data are moved around and what implications different factors have on data loading speeds, data security etc. When some people that I recruit for surveys complain about it taking longer than they thought, is that because their Internet is slow, or because the survey hosting company has switched from using their own servers to the cloud?

Data governance also interests me. With many market research companies using subcontractors, it is almost impossible to see all the way down the supply chain where data may be stored, processed or transferred to. The business risk related to data governance has increased exponentially for market research firms. Good times for lawyers and insurance companies.

But understanding AI, Cloud and computing in general is and will be immensely important for anyone interested in the affairs of this world. I think this is a topic that they should teach kids about at school, so that future citizens can make informed decisions about it. I want to learn more. So far, I have read three books on AI – it’s a start.

Barbara’s AI reading list:

  • Kartik Hosanagar: A Human’s Guide to Machine Intelligence
  • Ajay Agrawal, Joshua Gans, and Avi Goldfarb: Prediction Machines
  • Virginia Eubank: Automating Inequality

Update, also… Janelle Shane: You look like a thing and I love you

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!

Medical marijuana in Canada

I attended a very interesting Life Sciences Ontario (LSO) breakfast meeting on medical marijuana in Canada. Here are some key takeaways:


  • Currently there are only 38 licensed producers (LPs) in Canada that grow the plant.
  • Regulators control access to this market tightly and barriers for new companies to become licensed producers are high.
  • One of the challenges for production is to grow a standardized crop, i.e. plants that have roughly the same level of chemical compounds in them crop after crop.
  • Canada is perceived as one of the top players worldwide for growing of marijuana under controlled conditions that will stand up to health regulators’ scrutiny (along with Israel).


  • Dispensaries are illegal – there is no legal grey zone. It is not Health Canada’s job to monitor dispensaries. This is the responsibility of municipalities. There seem to be crack downs on dispensaries occasionally, but then they spring up again.
  • The only legal way to obtain medical marijuana in Canada is through licensed producers, and they will ship the product to the patient directly.
  • There is currently a push to make other forms of distribution legal. At the forefront of this is Shoppers Drug Mart’s effort to convince regulators to let them dispense the product at their pharmacies. So far, no luck.

Acceptance in physician practice and among patients

  • Clinical studies on the benefits of medical marijuana are challenging since it is difficult to grow a stable product that will have the same properties throughout the course of the trial. Getting clinical studies published in peer-reviewed journals is also challenging. However, audience members felt that Canada is in an advantageous position in terms of conducting more research in this area.
  • The Canadian Medical Association does not condone widespread prescribing of medical marijuana, but it also does not actively deter physicians.
  • One of the challenges for physicians in prescribing medical marijuana is the fact that the product comes in a variety of forms and may not be stable/standardized. Many are uncomfortable prescribing the dry form, since it is unclear how exactly to dose it for a given patient. Prescribing the oil may be easier for physicians.
  • Patients may also have different preferences for an oil vs an inhaled product or even an edible.


  • Experience in the U.S. has shown that the market will be impacted by decisions on taxation. If, for example, medical marijuana is taxed heavily and the recreational use of the product is taxed more lightly, patients will tend not to bother getting a prescription.


  • The regulatory process is moving slowly, slowly. While a regulatory framework has recently been proposed, making it into law could take 18 months or longer. According to meeting participants, the proposed framework will likely undergo many changes, and a final decision is not expected before 2019.

The LSO breakfast meeting took place on January 19, 2017 at the offices of Fasken Martineau in Toronto. The meeting was chaired by LSO Board member Dr. Alison Symington. The panelists were:

Ken Clement, CEO of ABcann Medicinals Inc, a licensed producer of medical marijuana. ABcann’s business is focused on growing organic standardized medical cannabis, recognizing that an expertise in growing standardized crops positions the company well in the medical marijuana market.

Christelle Gedeon, Associate at Fasken Martineau DuMoulin, is one of the firm’s regulatory affairs specialists with expertise in pharmaceuticals, medical devices, natural health products and medical marijuana, among other things.

Nick Antoniadis, Principal at Nick Antoniadis Consulting, is owner of his Toronto-based management consulting company. He is a marketing leader with over 20-years-experience in global healthcare. In the medical marijuana market, he has focused on connecting with and gaining insights from patient aggregators such as prescribing physicians.

Summary prepared by Barbara McGrath, PhD, Owner of Creative Research Designs, a company that provides customer insight and market research to companies in healthcare. This summary was not reviewed by LSO or any of the meeting participants. It reflects my own understanding of what was being said. You can contact me at:


Why Startups don’t do market research (but should)

Startups are great at coming up with innovative ideas, but why don’t they ever do market research?

“A startup is a human institution designed to create a new product or service under conditions of extreme uncertainty”, said Eric Ries in The Lean Startup. Extreme uncertainty is a defining feature of the startup experience. Uncertainty about the product, the supply chain, the customer, the business model. Two key success factors are experimentation and customer orientation. They enable the startup to achieve product-market fit and to creative a product that can eventually be commercialized.

Getting input from target customers is essential in developing a great offering. Yet, when I talk to startups about conducting market research, many dismiss the idea.

Often, startup founders believe market research is only for large multi-nationals, or that it comes later in the evolution of a company, when a company is established and has multiple successful product lines. Some think it is too expensive or they don’t fully understand the ROI. In addition, many founders tell me that they already have all the customer information that they want.

Let’s look at how startups typically gain information about their market, and what they are missing out on by not conducting market research:

1. At the early stage, founders’ market research typically consists of talking to ‘friendly individuals’ who are willing to give some feedback on the startup idea. The problem here is that the selection of individuals is very likely biased towards people who have a positive affinity to the founder and/or to the product to begin with. It is simply easiest to reach out to your existing network. How objective is the feedback of these individuals going to be?

In addition, we tend to connect with people who are similar to us – similar in age, in gender, in ethnic background, in social status – as it lets us stay in our social comfort zone. How representative are these people for potential users of your product? Particularly if a startup is developing a health-related product or service, potential users are likely very different from the twenty-something healthy males who tend to populate the startup community.

Plus, the ecosystem within which founders operate tends to be highly tech savvy. Getting feedback only within their own ecosystem gives founders a rather poor idea of how regular people would see their product. Granted, tech savviness is going to increase in the future. But do you really have enough time (and cash reserves) to wait for fifteen or twenty years until the majority of the population has caught up with you?

Opportunity missed: Conducting market research early on may help a startup discard an idea more quickly that won’t be popular outside their immediate circle of friends and like-minded acquaintances (‘fail early, fail fast’). Real market research means soliciting feedback from individuals that are not personally connected to you, and who belong to the intended market segment for your product.

Many startups use Kickstarter/Indiegogo as a means to assess if there is really a market out there for their product. While it is comforting to know that two thousand people are backing your campaign and are willing to pay good money now for something great to materialize in the future, this is not enough to build a successful company on. Also, let me tell you a little secret as a market researcher and anthropologist who is in touch with the ‘common man/woman’: Many people have never heard of Kickstarter or Indiegogo.

2. As startups mature, products typically go through many iterations and user experience is incorporated in a continuous feedback loop in the product development process. The UX lead will bring in users, expose them to the latest version of the product and propose adjustments accordingly. In addition, the product itself, assuming that it has a digital component, sends back usage data, which allows the startup to assess how well certain features are performing and conduct A/B tests.

Having a mountain of data that streams back through the device or app makes founders confident in their ability to optimize the product. While this is certainly the case, at times it is hard to ‘see the forest for the trees’. As startup guru Steve Blank said, you need to ‘get out of the building’ to understand your potential market and to learn about your potential customers.

Usability research and user experience research are essential for product development from a technical standpoint and from a design standpoint. In contrast, market research helps you understand the broader picture, beyond your immediate product to prospective customers and their evolving needs and pain points for which your product (along with many others) may provide a solution.

Some methods employed for market research are similar to user research, and some are different. Market research consists of the full gamut of large-scale, quantitative surveys, mobile quick check-ins, trade-off exercises, ad tests, focus groups, location-based research, ethnography, online discussion boards, co-creation labs, in-depth one-on-one interviews and many more.

Opportunity missed: User research looks at, well, users. Market research looks beyond. Only input from a wider target audience will help your startup understand where your product is missing the mark in a fundamental way.

You should also engage in market research as a ‘disaster check’ before going to market. While your product may be delightful and great in terms of functionality, perhaps you are not communicating something that you think is trivial, but that consumers want to know. Safety in wearable devices is a good example. It may be obvious to you that devices have to undergo rigorous safety testing before you are allowed to sell them to people, but the regular person may not be aware of this. If you launch a new wearable without a footnote on safety in your communications, you may be impacting your sales in a significant way. While safety may not be the reason people want to buy your device (unless it is a safety device) they want to be reassured that it is not going to harm them.

Then, after a successful product launch, your startup will only be able to continue expanding its market if you find out what non-users need and want, and if you understand their perceptions of the competition. A successful product fulfills a need better than other products. To find out what target customers need and how your product stacks up against others in addressing that need, you have to engage in market research.

Market research enables startups to step out of their comfort zone, go beyond speaking to the ‘enthusiasts’ and ‘evangelists’ and build an offering that resonates with a larger audience. Do not miss out on this opportunity to critically examine the appeal of your idea and to lay the foundation for exponential growth.

Market research for startups has clear ROI in the following areas:

  • Establish the size of your potential market (ROI: A key talking point when you approach investors at your next funding round)
  • Determine size of different segments within your market and prioritize them in terms of their potential for your product (ROI: Don’t waste money and effort on marketing to a segment that you have personal affinity to but that is tiny or less likely to buy your product)
  • Uncover needs and pain points of potential customers (ROI: Allows you to pivot early, and conserve precious early funding, if your product misses the mark)
  • Validate and refine user personas (ROI: Supports better product-market fit and sets you on a growth trajectory beyond current users to potential future users)
  • Optimize marketing and communications to focus on the product benefits that potential customers most care about (ROI: More bang for your advertising buck)
  • Get an understanding of competitive offerings, how your product stacks up and how to position your product for success (ROI: Stay ahead of the competition and get a bigger share of the pie)
  • …and last but not least: Obtain unbiased feedback on what people really think about your product (priceless 🙂 )

Some questions that startups may have about market research: Is it expensive? Can I do it myself? How do I go about it? There are many reasonably priced ways to conduct market research. Some components can easily be done by the startup itself. However, it is important to get expert advice on methodology and on the design of the research questions, to ensure your research is representative and unbiased.

If you’d like to get more information on what market research can do for your startup, please contact me. I am happy to give you an initial consultation free of charge. You can reach me at:

Also published on Medium