Marcia Kaye

Shoppers in remote northern communities only saw savings of 67 cents, on average, for every dollar of subsidy handed out to grocers – many of which are based in southern Canada

Hunger is such a dire problem in Canada’s remote northern communities that the federal government offers a food subsidy through retail grocery stores that is supposed to be passed along to consumers.

But that’s not happening, according to a new 91�Թ� study.

For every one dollar in subsidy that the large retail companies received through the Nutrition North Canada program, the average price for the consumer has gone down by only 67 cents, says study co-author Tracey Galloway, associate professor and chair of 91�Թ� Mississauga’s department of anthropology.

Tracey Galloway (supplied image)

So where did the other 33 cents on every dollar go?

“It went to the retailers who received it,” Galloway says. “How they use those additional funds is not captured in any metric that’s made available to us.”

Wherever the extra money ended up, it didn’t go to consumers, she adds.

With very low household incomes and food prices double or triple those in southern Canada, remote northern communities have shockingly high rates of food insecurity. “At least two-thirds of households in northern communities don’t have enough nutritious food, or enough food at all, and it’s more common in households with children,” says Galloway, who has been studying the issue for more than a decade.

She collaborated on this study, published in the Journal of Public Economics, with Nicholas Li, an assistant professor in the department of economics at Toronto Metropolitan University who previously worked at 91�Թ�. They used publicly available information collected by the government and posted on its Nutrition North website.

“This was always intended to provide some accountability,” Li says of the data shared on the site. “But no one had ever actually used that information to try to see how much of those subsidies was passed through to the consumer.”

Galloway and Li looked at more than 100 isolated communities across several provinces and territories, such as Attawapiskat and Fort Severn in Northern Ontario, Aklavik in Northwest Territories and Resolute, Gjoa Haven and Pond Inlet in Nunavut. Most of these communities lack year-round access by road, water or rail and are hundreds of kilometres away from larger service hubs.

While the communities, averaging 1,000 people, are mostly Inuit, First Nations or Métis, very few of the retail stores are Indigenous-owned. Most belong to companies based in southern Canada.

By far the most dominant retailer is the North West Company (which operates as Northern Stores), with its head office in Winnipeg. It receives half of the $120 million in annual Nutrition North subsidies. Its largest competitors are Arctic Co-operatives Limited and Fédération des coopératives du Nouveau-Québec, with headquarters respectively in Winnipeg and Montreal.

“Evidence like this might lead you to question why so many taxpayer dollars are moving into the coffers of a southern-owned retailer operating in these communities, and often operating as a monopoly,” Galloway says.

The researchers found a stark difference between communities with one store and those with two stores. In early 2019, for example, when the federal government raised the subsidies, retailers in communities with two or more stores passed along 84 cents on the dollar to consumers. But where there was a monopoly and the single retail store faced no competition, consumers received only 55 cents.

The Nutrition North program, launched in 2011, was supposed to be an improvement over the old Food Mail system, which was a transportation subsidy administered by Canada Post to deliver food to isolated communities. But retailers objected to Canada Post’s monopoly on food transport, consumers complained that grocery prices remained high and the program subsidized all food whether nutritious or not.

By contrast, Nutrition North was intended to address these problems by paying retailers directly, placing higher subsidies on perishable foods such as vegetables, fruits, eggs, fresh milk and infant foods, and creating a system of accountability whereby retailers would have to report data into a sophisticated monitoring system.

Many Indigenous entrepreneurs launched small grocery stores, but they weren’t eligible for the subsidies because the reporting system can be labour-intensive and they were often forced to close. Moreover, accountability measures have rarely been enforced, with good reason: kicking a non-compliant retailer out of the program would eliminate the subsidy altogether, harming the consumer even more.

The researchers say there’s room for optimism. The federal government has formed a working group and is consulting with community members, with a long-term goal of creating a more equitable and accountable program. Galloway and Li have partnered with Kimberly Fairman – an Inuk resident of Yellowknife, executive director at the Institute for Circumpolar Health Research and adjunct lecturer at 91�Թ�’s Dalla Lana School of Public Health – to compare federal and local concepts of what food security supports should look like.

In the short term, the researchers want to see clear data transparency, with public reporting of prices for every subsidized item, so consumers – and government – can see where the money is going.

“We need action soon because people are hungry and are going without,” Galloway says. “To say it’s urgent is a vast understatement.”

Historical study suggests link between institutionalization, hip fractures and death

Christopher.Sorensen — Fri, 01 Sep 2023 14:18:18 +0000

Historical study suggests link between institutionalization, hip fractures and death

Christopher.Sorensen Fri, 09/01/2023 - 10:18

Cutline

(photo by Sukanya Sitthikongsak/Getty Images)

Topic

Research & Innovation

91�Թ� Mississauga

Subheadline

Researchers studied records of people who died between 1910 and 1967 and lived in Missouri state hospitals, city infirmaries and other public institutions

A team of anthropologists has found that the skeletal remains of people who lived and died in American public care institutions in the last century have much to tell us about the connection between patient neglect and hip fractures – a connection that may still exist today in Canada.

Using paleopathology – the study of disease in the past using sources including human remains – the three researchers studied individuals who lived in state hospitals, city infirmaries and other public institutions in Missouri and who died between 1910 and 1967.

They found evidence of hip fractures in 4.3 per cent of institutionalized individuals, almost double the 2.3 per cent prevalence among non-institutionalized people. Death records showed that many of these broken hips occurred from preventable accidents, including falling out of a wheelchair, tripping on an uneven floor, slipping in a bathtub or being pushed to the ground (most hip fractures need quick medical intervention to prevent deadly complications.)

“These folks were living in institutions that were supposedly caring for them,” says Madeleine Mant, assistant professor in the 91�Թ� Mississauga's department of anthropology and an author of the study, which was recently published in the journal PLOS One. “But ultimately the lack of care or the lack of resources or the lack of attention has created instances where they actually suffered fractures that led to their deaths.”

With colleagues Carlina de la Cova, of the University of South Carolina in Columbia, and Megan Brickley of McMaster University in Hamilton, Ont., Mant had access to a large anatomical skeletal collection housed at the Smithsonian National Museum of Natural History in Washington, D.C. These were people unclaimed after death – either because they were alone in the world, their loved ones were too poor to afford a burial or their families simply weren’t informed of their passing.

The 600 individuals in the study included Euro-American and African-American women and men in their 40s through 90s. More than one-third had been institutionalized.

In both cohorts, older white women showed the greatest prevalence of hip trauma. But the finding that was most critical – and, for Mant, the most disturbing – was that of the instances of broken hips leading to death, 82 per cent of incidents happened in institutions.

“That’s what struck me the hardest – the idea that these vulnerable individuals were taken in by institutions that were obviously underfunded and understaffed and that undervalued the lives of these folks.”

Mant points to two explanations. The first is structural violence, a term describing the way social structures and institutions cause harm to people through inequities and marginalization. In the case of the institutions being studied, this could include underfunding, overcrowding, poorly trained staff and poorly maintained facilities. The second is cultural apathy, which means society doesn’t care enough to rise up, speak out and demand change.

While anthropologists look at the past to better understand the present, Mant says in this case it’s less an echo and more a direct line to what we’re seeing today in many care institutions in Canada. She says that whenever she talks about her research, people will tell her about an aunt, a grandparent or other family member who suffered a hip fracture while in care.

“This is not just a historical story, and it’s not just an American story,” Mant says. “It’s an ongoing modern concern and it seems to be, unfortunately, global.”

Other studies from the Netherlands and Switzerland have also shown a disturbingly high risk of fractures among institutionalized people. Mant’s study includes a mention of a Canadian news story that made headlines last year: a woman in an Oakville, Ont., nursing home had major spiral fractures in both thigh bones when she died, but staff seemed to know nothing about it.

Mant hopes the study will help increase awareness and encourage those making public policy to treat equitable care of institutionalized people as a basic human right.

“We need to be taking care of our most vulnerable, bring this to people’s minds who might not have been aware of it and, honestly, shame people who have known about these problems and haven’t done anything so far,” she says.

Researchers explore use of light-activated treatment to target wider variety of cancers

Christopher.Sorensen — Thu, 15 Sep 2022 17:30:33 +0000

Researchers explore use of light-activated treatment to target wider variety of cancers

Christopher.Sorensen Thu, 09/15/2022 - 13:30

Cutline

Human colorectal cancer cells (photo from National Cancer Institute/Unsplash)

Topic

Research & Innovation

91�Թ� Mississauga

Chemotherapy drugs can be lifesaving – but they don’t work for all patients or for all cancers.

That’s why a team of researchers at the 91�Թ� Mississauga is looking at new ways to use special types of light to target cancer cells resistant to current drug therapy – an approach that might be easier on some patients than traditional chemotherapy.

The approach, called photodynamic therapy, uses precisely targeted light – usually from a laser – to activate or “turn on” a drug to kill cells. While currently used mostly to treat skin cancers, researchers want to know if there’s a way to safely get the light to cancers that are deeper inside the body. They also want to figure out how to recognize which cancers will respond to the cell-killing drugs and which will be resistant.

Karishma Kailass

The challenge, researchers say, is to get the light as close as possible to red light. Of all the colours in the visible light spectrum, red has the longest wavelength, which enables it to penetrate tissue, but also the lowest energy, which minimizes harm to healthy cells.

Karishma Kailass, a PhD candidate in the department of chemical and physical sciences, found that using an approach called two-photon light, where two tiny particles of light hit at exactly the same time, achieved this result. It doubled the wavelength, halved the energy and, together with a special cancer-killing molecule that’s activated only by light, successfully destroyed cancer cells that would otherwise have been resistant to conventional chemotherapy.

Kailass says that most cancer therapy research focuses on particular proteins that are over-expressed in cancer cells since more of the molecule or drug you’re making will bond to that over-expressed target.

“What’s new about what we’ve done is we’ve taken an approach that targets something that is under-expressed in cancer,” she says.

The drug-resistant pancreatic and breast cancer samples the team examined showed low levels of a protein called carboxylesterase 2. Since that’s the very protein targeted by the most common chemotherapy drugs, cancers with low levels would be resistant. While the levels of this protein vary from individual to individual, using the two-photon light causes the molecule to show different colours of fluorescence depending on the level. When there are high levels of the protein present, it fluoresces red. With low levels, it fluoresces yellow.

“This way you can tell whether the patient will be responsive or resistant to chemotherapy,” Kailass says. “And then if they are resistant, you can use the molecule itself to actually treat them.”

The therapy can be extremely precise. For cells that are red – showing high levels of the protein – conventional chemotherapy would work, but the molecule wouldn’t because the protein would break it down. For cells that are yellow – and resistant to regular chemotherapy – the molecule would retain its form and the two-photon light would activate it to kill the cancerous cells.

The approach is expected to be easier on patients, take less time and could be performed on an outpatient basis, using an IV to administer the photosensitizer molecule so that it settles into the tumour site and fibre-optic technology for delivery of the light. The research has so far been done only in the lab, but Kailass says the next steps are animal studies and then, it’s hoped, clinical trials in humans.

Kailass’s findings came about by happy accident. She used the wrong light in the middle of a photosensitivity experiment involving the molecule in question. “I took the purple light to shine on the yellow when I was supposed to take the green light to shine on the red,” she says, adding that she watched in surprise as the molecule produced an increase in cancer-killing properties. “Hmm, haven’t seen that before.”

She went on to reproduce the study. The findings were published in June in the Journal of Medicinal Chemistry.

Kailass works in the laboratory of Andrew Beharry, an assistant professor in 91�Թ� Mississauga’s department of chemical and physical sciences who calls her “exceptionally talented.”

“We envision our molecule to help clinicians with drug-decision making, as well as providing them with a novel therapeutic that kills cancers differently than conventional chemotherapeutic drugs.”

Preventing disease through AI: Laura Rosella is using machine learning to suggest ways to reduce diabetes rates

noreen.rasbach — Thu, 02 May 2019 18:41:30 +0000

Preventing disease through AI: Laura Rosella is using machine learning to suggest ways to reduce diabetes rates

noreen.rasbach Thu, 05/02/2019 - 14:41

Cutline

(Illustration by Elena Xausa)

Marcia Kaye

Topic

Our Community

Artificial Intelligence

Dalla Lana School of Public Health

Diabetes

Research & Innovation

Vector Institute

Chronic diseases such as Type 2 diabetes take a massive toll on Canadians, both on our health and on our health-care system. Since obesity and inactivity are major risk factors for diabetes, the most common intervention so far has been for doctors to counsel their high-risk patients to lose weight and exercise more. That’s good, but is that the most effective approach as diabetes rates continue to soar?

Drawing on machine learning for her research, Laura Rosella, an epidemiologist and associate professor at the 91�Թ�’s Dalla Lana School of Public Health, suggests that broader community-based actions could prevent more cases and save more money than targeting individual patients.

When Rosella took the risk-prediction algorithm that she and her team developed – the Diabetes Population Risk Tool – and applied it to Statistics Canada’s health information on the population, a clear picture jumped out at her. Beyond obesity, influential risk factors to predict who would get diabetes include lack of access to physical activities, social isolation, food insecurity, low socioeconomic status and chronic stress. The data suggested that making investments to address these factors could prevent disease.

Public health departments had suspected as much, but this was the first time they had the evidence to support it. Rosella’s algorithm would now enable them to clarify which populations to target for prevention efforts, and to calculate the health and economic benefits in their own municipalities from various investments, such as improving neighbourhood walkability. This opens up a whole new way of looking at health care, says Rosella, who holds a Canada Research Chair in Population Health Analytics. “It’s not a tweak. It’s going to actually change the way we think about disease and care.”

Rosella’s research caught the attention of the Region of Peel, west of Toronto. With its large South Asian community, a group that has a genetically higher risk of diabetes, and its car-dependent suburban neighbourhoods that may discourage walking, the prevalence of diabetes in Peel is 26 per cent higher than the provincial average. Rosella’s algorithm showed that at the current rates of the disease, the projected health costs over 10 years would be $689 million.

“That was really compelling,” says Julie Stratton, an epidemiologist with Peel Public Health. “This tool allows us to provide the information showing why it’s really important to make investments now.”

These investments might include anything that encourages people to be more physically active, such as safe walking routes, bike paths and more public transit for commuting to work (which increases the amount that people walk). With the vision of building healthy communities, Peel’s official plan now requires that new development applications undergo a health assessment, which supports pedestrian- and transit-friendly neighbourhoods.

Other municipalities are becoming interested in Rosella’s research, too, especially since it enables them to attach dollar figures to various health risks. In the Greater Toronto and Hamilton Area, the analytics found that diabetes-related medical costs attributable to inactivity alone exceed half a billion dollars every year. Ottawa Public Health used the algorithm to calculate that a long-term plan to improve public transit and build more bike paths would prevent some 4,000 cases of Type 2 diabetes over 10 years.

Building on her initial success, Rosella has since spearheaded the development of other predictive algorithms, such as the High-Resource User Port. A mere five per cent of Ontario’s population consumes about half of the province’s health-care budget, so Rosella set out to predict which groups would likely become future high users of the health-care system. She and her team followed health-care use of 60,000 people over five years.

To their surprise, they found that in addition to the expected predictors of age, chronic conditions and smoking, an equally strong predictor of becoming a high user was people’s own feelings about their well-being. “This reinforces the need to listen to patients and ask them how they feel about their health,” Rosella says.

Rosella followed up the initial study with one using a more global measure of people’s self-rated life satisfaction and tracked them for several years. She found that healthy people who were most dissatisfied with life had triple the rate of developing a chronic disease such as diabetes, heart disease or chronic obstructive pulmonary disease, compared to those who were most satisfied with life.

“I’ve been studying risk factors for chronic diseases for 15 years, and this was one of the biggest effects I’ve ever seen,” she says. The relationship between life dissatisfaction and becoming a high-cost health-care user persisted even after adjusting for income, activity levels, mood disorders such as depression, and lifestyle behaviours.

There’s no pill for life dissatisfaction, unhappiness or loneliness, Rosella says. But instead of thinking about a patient only in terms of high blood pressure, anemia or borderline diabetes, she suggests that equally important considerations include whether one lives alone, has sufficient income or has a safe place to walk.

“We need to think of patients as people, and all the complexities that surround them.” She adds that there may be a growing role for social prescriptions, such as a doctor’s note allowing free admission to a museum or art gallery. She points out that last year the U.K. government appointed a minister of loneliness.

Rosella, who in 2018 was named one of Canada’s Top 40 Under 40, is a faculty affiliate at Toronto’s Vector Institute for Artificial Intelligence. In 2018 she received a Connaught Global Challenge Award to launch a global network that will use predictive analytics to address world population health challenges.

Says Rosella: “AI has huge potential to be beneficial both for population health and the sustainability of the health-care system.”

Paul and Alessandra Dalla Lana donated $20 million last year to U of T’s Dalla Lana School of Public Health to support research such as Laura Rosella’s. This recent gift comes almost a decade after their first $20-million gift to establish the school.

This article first appeared in the 91�Թ� Magazine. Read more of the Spring 2019 issue.

So you want to build a startup? Canada’s top entrepreneurs offer 91�Թ� 10 tips

ullahnor — Tue, 28 Mar 2017 13:22:06 +0000

So you want to build a startup? Canada’s top entrepreneurs offer 91�Թ� 10 tips

ullahnor Tue, 03/28/2017 - 09:22

Cutline

Among 91�Թ�’s better known startups are Nanoleaf, Nymi, Arda Power, Whirlscape and Northern Biologics. Nanoleaf's Gimmy Chu co-founded the company, which develops the world's most energy efficient light bulb (photo by Johnny Guatto).

Author legacy

Marcia Kaye, John Lorinc and Scott Anderson

Topic

Creative Destruction Lab

Rotman

Impact Centre

Only half of new Canadian companies survive past five years, and only a tiny percentage become global success stories. Tiff Macklem, the dean of 91�Թ�'s Rotman School of Management, has been thinking and writing a lot about how to improve these odds. He doesn’t believe Canadians are lacking in education or innovative ideas. But he does think we have a problem converting ideas into products and services that people – lots of people – want. Where is Canada’s answer to Spotify (first heard in Sweden) or Skype (founded in Estonia)?

“The crux of our problem is commercialization and scale,” Macklem says.

In his view, what Canadian startups are missing is great business judgment, which, as he points out, is not easy to acquire: “A new venture cannot simply go downtown and purchase a unit of business judgment,” he says.

To address this, the 91�Թ� Entrepreneurship network of incubators, accelerators and programs, including at Rotman, are connecting fledgling companies with expert mentors to provide the kind of hands-on advice they’ll need to get through those perilous first few years – and, with any luck, eventually compete on a global scale.

Here are facts about 91�Թ� startups:

Between 2013 and 2015, researchers at 91�Թ� and its partner hospitals created an average of one new invention every 21 hours and filed a new patent application an average of about once every five days
About three quarters of 91�Թ� inventions are co-developed by students or post-docs
91�Թ� offers 68 courses covering various aspects of entrepreneurship.

For Entrepreneurship @ 91�Թ� Week, some of Canada’s top entrepreneurs share lessons they learned on the path to success.

Learn more about Entrepreneurship@UofT Week

No. 1: “As an entrepreneur, the best product you can build is yourself”

Allen Lau is the CEO and co-founder of Wattpad, an online story-sharing community with 45 million monthly users.

In the early days of Wattpad, 91�Թ� alumnus Lau had everything under control. He and co-founder Ivan Yuen had come up with the idea, developed the technology and written the code. They now waited for readers and writers to flock to it and advertising revenue to pour in. It took a while.

That first year, 2006, Wattpad had barely a thousand users. Over the next couple of years, however, interest grew and so did the company. But Lau discovered that while he was proficient on the technology side, in other skills – marketing and publicity, raising capital – he was less competent.

Or as he puts it: “I was horrible! I realized that if I wanted to scale the company, I had to scale myself,” in other words, quickly acquire new skills with each phase of the company’s growth. When Wattpad needed more employees, Lau suddenly had to learn through trial and error how to hire people, then how to delegate. When the company required more than one engineer or marketer, he needed to hire team leaders, which meant he had to become a leader himself.

“And that’s a very different skill set.”

Approaching investors required different expertise again. “When I approached 40 potential investors, 39 said no,” Lau says. “It wasn’t because the idea wasn’t good but because I failed to communicate it.” With practice, his pitch kept improving. As Wattpad grew, Lau’s job shifted to communications and strategy. Now with a staff of 130 and with 45 million monthly users (even CanLit star Margaret Atwood has published new work on the site), Wattpad has moved toward becoming a global entertainment company, partnering to co-produce original Wattpad stories for movies and TV.

“It’s almost like every year I’m getting a new job, which can be very daunting if you’re not good at self-learning,” Lau says.

No. 2: “Find a business idea you feel passionate about”

Cynthia Goh is the academic director of 91�Թ� Entrepreneurship and the founding director of 91�Թ�’s Impact Centre, a business incubator.

A serial entrepreneur herself, she has assisted at the births of 136 startups. From her perspective as an entrepreneur and a mentor, Goh looks for a certain special enthusiasm as a major predictor of success.

“The most important thing is passion. Not for making money, but for the idea.”

No matter how awesome your business concept, she says, if you don’t believe in it strongly enough, you’ll give up at the first obstacle.

“Being an entrepreneur can be a tough road so you’ve got to be fuelled by passion.”

She cites a recent 91�Թ� success story. Adrenalease sells performance clothing that realigns posture, and Goh credits the infectious enthusiasm of founder and president Noureddin Chahrour, a kinesiology grad, for the company’s early achievements.

“He is obsessed with muscles, and how they function,” Goh says.

In 2015, that passion helped persuade four of the five venture capitalists on CBC-TV’s Dragons’ Den to offer him deals.

No. 3: “Get an advanced degree, and set audacious goals”

Kristjan Sigurdson is the associate director of the Creative Destruction Lab and a PhD candidate at the Rotman School of Management. Launched in 2012, the Creative Destruction Lab’s nine-month program pairs startup founders with experienced technology entrepreneurs and investors. The program, based at Rotman, is designed for early-stage, science-based technology companies.

Having an advanced degree and setting audacious goals for your startup gives you three important advantages, says Sigurdson. First, your deep expertise gives you the credibility to go into a meeting with investors, teach them something about the future of science or technology and convince them that you can meet your goals.

“If you do that successfully, they’re probably going to want to take another meeting with you.”

Second, it enables you to hire others with deep expertise in your field. If you have an MBA but no experience in quantum physics, it’s difficult to recruit someone with a PhD in quantum physics, Sigurdson observes.

“It’s easier to learn how to run a company than it is to become a leading expert in a field.”

Third, when your company trajectory invariably changes – because of an obstacle you couldn’t anticipate – it’s easier to adapt if you have a deep well of knowledge to draw from and a network
of like-minded experts to help you. Sigurdson offers the example of a founder working with the Creative Destruction Lab whose audacious goal is to build a next-generation quantum computer that uses off-the-shelf components and works at room temperature (most quantum computing research is conducted at low temperatures). The founder has a PhD in quantum information theory and a large network of collaborators in multiple countries.

“If he just had an undergraduate degree in physics and a faculty adviser – or an MBA and a business plan – he wouldn’t have lasted long in a room with investors,” says Sigurdson. “And the audacious goal will help him to attract the top-notch talent he’ll need to succeed.”

No. 4: “Accept that sometimes you’ll be unlucky, and move on”

Daniel Debow is a serial entrepreneur and an adjunct professor of law at 91�Թ�. A member of the teams that founded Workbrain and Rypple, Debow and his partners sold Rypple to Salesforce in 2012, but Debow stayed on for three years to oversee emerging technologies. He is currently building a new startup, Helpful.com.

“One of the most important lessons I learned,” says Debow, “was from David Ossip (the founder of Workbrain and a 91�Թ� Scarborough alumnus).

It was the power of the word ‘unlucky.’”

Early in his career, Debow collaborated with Ossip on Workbrain – a workforce-management software system for companies with a large number of hourly staff.

After 18 months of development, they’d finally landed British Airways as a customer and Ossip was planning to attend an airline conference in order to pitch new clients. But the day he was scheduled to travel was Sept. 11, 2001. He never got to the conference, and the terrorist attacks sent the aviation industry into a years-long tailspin. No one was buying new systems.

“David just said, ‘unlucky,’ and we went off and built another plan.” The point, Debow says, is that entrepreneurs like Ossip don’t dwell on unforeseen disasters, nor do they spend time obsessing
over what went wrong.

“I learned you have to take the world as it is, not as you wish it to be,” reflects Debow. “Stuff happens. You have to respond.”

No. 5: “Spend at least one day a week cultivating relationships with investors”

Anthony Lacavera is the founder and chairman of the Globalive Group. He also founded Wind Mobile, which was sold in 2015 to Shaw Communications for $1.6 billion.

“It doesn’t matter how good your technology or your team is,” says Lacavera, a 91�Թ� alumnus who in the past 20 years has founded a dozen startups – mostly in telecommunications and software.

“If you have no capital, someone with technology or a team that’s not as good but who has capital will beat you 10 times out of 10.”

Lacavera advises entrepreneurs to continually build relationships with investors by talking to their existing ones, asking for referrals to new ones and cold-calling potential ones. He’s done that for years, and that’s why he was able to raise $700 million to start Wind Mobile in 2008.

“Wind succeeded not because I’m a great salesperson or had an unbelievable business. It’s because I was able to raise the capital,” he says.

No. 6: “Test out your ideas in the real world. Don’t get caught in analysis paralysis”

Toni Allen is the founding partner of R3VE Business Design Inc., which specializes in user experience and business innovation.

For entrepreneurs pushing themselves to create a unique product, there’s always a powerful temptation to devote too much time to perfecting a solution, and not enough to getting it out the door.

The lesson, according to Allen, a 91�Թ� Mississauga alumna: “You lose opportunities. You have to get out there and test your ideas.”

Allen’s five-year-old firm, R3VE, provides user experience, service design and business model innovation to large corporate clients, including banks. Early on, Allen recounts, she was developing a product geared at a specific retailer. Allen had identified the right person to pitch and had created a proposal but waited too long before making her approach, and the ship sailed.

This habit of mind – overplanning – came from her days working in a large bank where she’d sought to convince her colleagues that they needed to focus on the way design and technology overlap in the delivery of financial services. In that setting, she recalls, “I didn’t know how to pitch ideas and make a business case.”

Those early instincts about the opportunity for leveraging design thinking and user experience principles in the financial services market proved to be correct and provided the impetus for R3VE. But her insights only became a viable business when she got herself in front of customers: “When you have an idea, you need to try it and test it. Don’t get caught in analysis paralysis.”

No. 7: “Choose your business partners carefully and communicate openly and honestly with each other”

Sonya Amin is the director, client services, of AXS Studio, which she co-founded in 2004 with fellow 91�Թ� alumni Eddy Xuan and Jason Sharpe. With 15 employees at its downtown Toronto office, the company creates visuals for teaching science and life sciences, including illustrations, animations and interactive applications.

In hindsight, says Amin, she was lucky. She and her two business partners share the same goals for AXS Studio and their individual strengths complement each other. But they didn’t spend much time planning it that way, she admits.

“We went into it as a dream that three classmates shared when they were in school.”

What they did have was trust in each other – crucial for a relationship that, like a marriage, will be sorely tested at times, says Amin.

“If you don’t trust your partner with your life then you shouldn’t be getting into business together.”

Amin says the ability to speak openly and honestly with each other is paramount – a lesson the AXS Studio founders learned when it became apparent that they were not aligned on how they
defined growth for their company.

“We had to have a candid conversation and managed to get to the heart of the matter: AXS’s goals needed to be aligned with our rarely discussed personal goals.”

This realization prompted the partners to emphasize open and clear communication with their employees as well.

“When we hear of anyone talking vaguely, or if we suspect that people might be working at cross-purposes, we stop and look at it more closely,” she says. “This has helped in lots of different
areas from human resources to day-today production.”

Amin credits the 91�Թ� biomedical communications program with enabling students like her with an aptitude for both art and science, to make a career out of their dual loves. The program is
also very practical, she says, adding that staff recommended clients when she and her co-founders launched AXS Studio.

“They’re amazingly supportive of their students.”

No. 8: “Don’t mistake expressions of interest from potential customers as evidence that you’ve tapped into a viable market”

Karl Martin is the co-founder and chief technology officer for Nymi, a tech company that allows users to gain access to their devices by wearing a wristband that detects their unique heart pattern.

Throughout 2015, executives for Nymi, a Toronto firm that’s developed a wristband security device, were doing the rounds, talking up their technology to potential customers. At meeting after meeting, recalls Martin, they’d hear the same thing: we love your technology, which allows wearers to log onto a range of computer devices by detecting unique heartbeat patterns, but we need more features and capabilities.

As the 91�Թ� alumnus recounts, he and his team were energized by all that interest, but they had big challenges taking the next step, which was to really figure out how to hone the positioning of their device to fit the needs of specific users.

Indeed, says Martin, it was only after Nymi started getting orders from pharmaceutical manufacturers that he realized what the stumbling block had been. In ordinary office settings, there was no way to compel employees to wear the wristbands. But in the controlled environment of a manufacturing facility, where workers are required to wear sterile and protective gear, that problem evaporated. And so did the sales roadblock.

The lesson, Martin observes, is that many entrepreneurs whose startups are transitioning from research and development to marketing glom onto the slightest spark of interest from potential customers as evidence that the firm is ready to lift off.

“Recognize that you usually think you have a product-market fit before you actually do.”

No. 9: “Be prepared to act quickly when faced with a big challenge”

Kim Shannon is the founder, president and co-chief investment officer of Sionna Investment Managers, which has assets of $5 billion.

As Sionna Investment Managers has grown over the past 15 years, says Shannon, so has her need to be adaptable.

“You have to keep nimble as issues emerge because you never know what’s around the corner.”

One of the most significant challenges happened when her biggest client – a fund company representing 90 per cent of her business – asked her to lower her rates for them.

“We fired them,” Shannon says. A risky move indeed, but she knew that working with a difficult or controlling client didn’t fit with her long-term goals for the company.

It was a tense time but a brief one. Soon other interested companies began approaching Sionna.

“Before, those companies hadn’t wanted to be secondary clients,” she explains. “But once the big one was gone, we had people coming to us. They actually admired us for what we’d done.”

Sionna quickly diversified its client base and expanded the business. Ultimately, Shannon mended relations with the big client, and she now includes the company’s stock in Sionna’s portfolios.

While she was a student at 91�Թ�, Shannon served on student council, launched a women’s newspaper and started a peer-counselling program. She credits her volunteer activities for building
her skills in organization, leadership and collaboration.

“If you have volunteer experience, your career progress will be much faster,” she says. “Many successful people I see in business were once student leaders.”

No. 10: “Skate to where the puck is going”

Michael Serbinis is the the founder and CEO of League, a digital health insurance platform. Previously, he co-founded Kobo, the e-reader service.

When Serbinis thinks about the long-term goals for his company, he envisions a trillion-dollar global market.

“Our goal,” he says “is to disrupt an age-old insurance industry with a new philosophy focused on empowering people to be healthy every day.”

As the head of a startup, though, Serbinis needs to balance his long-term ambitions with the smaller challenges he and his team face every day. As with all startups, League staff are building product, hiring and firing staff, landing the next customer, making payroll, meeting investors and more.

“It never stops, and it is pretty easy to get caught up in the short term,” says Serbinis.

“But you have to keep your eye on the prize. I do that by having very clear long-term objectives that I repeat over and over to myself and the team. We regularly review our plans and brainstorm: What’s it going to take to meet our long-term goals? What are the risks, and what are the opportunities?”

Serbinis says it’s important to make bets on the future.

“As CEO, you cannot be consumed by today. You need to be putting in place the infrastructure that is going to help you scale. You need to be setting up enablers that will help your team three, six, nine and 12 months out.”

Reflecting on his time as a grad student at 91�Թ�, Serbinis says his supervisor was Joseph Paradi, an engineer-turned-entrepreneur who built Dataline, one of the first digital stock-quote platforms in Canada.

“He was my mentor at a time when I had no money, and I didn’t know what being an entrepreneur meant or how to lead or manage teams,” says Serbinis. “He inspired me, and we still keep in touch to this day.”

Watch for this story and others about entrepreneurship in the Spring 2017 issue of 91�Թ� Magazine.

(Daniel Debow's photo was taken by Jordana Huber, Kim Shannon's photo was taken by Gordon Hawkins and Michael Serbinis photo courtesy of the League)

Second skin: 91�Թ� invention offers hope for burn victims

sgupta — Tue, 22 Jan 2013 14:43:29 +0000

Second skin: 91�Թ� invention offers hope for burn victims sgupta Tue, 01/22/2013 - 09:43

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Lian Leng, Boyang Zhang, Axel Guenther (holding device) and Arianna McAllister (photo by Erin Vollick)

Marcia Kaye

Author legacy

Marcia Kaye

Topic

Breaking Research

The Fraser Mustard Institute for Human Development

sgupta — Wed, 26 Sep 2012 12:07:05 +0000

The Fraser Mustard Institute for Human Development sgupta Wed, 09/26/2012 - 08:07

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The first 2,000 days of life are crucial, says Professor Stephen Lye, executive director of 91�Թ�'s Fraser Mustard Institute for Human Development (image courtesy The Faculty of Medicine)

Marcia Kaye

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Marcia Kaye

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Two babies are born in the same neighbourhood, both with genetic predispositions to develop depression in their 20s, obesity in their 30s and diabetes in their 50s.

One child will grow up to have all these conditions, while the other will develop none of them.

It’s the same story with other non-communicable conditions, including learning disabilities, anxiety disorders, high blood pressure and cardiovascular disease. Why does this happen, what environmental influences may be interacting with those genes, and how can we intervene to help more children—in fact, all children—stay on the path toward optimal health and lifelong well-being?

As researchers around the world pursue these questions, the 91�Թ� is creating a unique new research and outreach institute that could revolutionize our understanding of these issues. The Fraser Mustard Institute for Human Development is an academic umbrella that links researchers across multiple disciplines.

A virtual construct whose scope is not restricted by the size of a building, the Fraser Mustard Institute immediately attracted interest from 75 researchers and expects to keep growing.

“It’s bigger, wider and more comprehensive than anything we’ve ever done,” says Executive Director Stephen Lye, a 91�Թ� Professor in the Departments of Obstetrics and Gynaecology and Physiology, and the Associate Director of the Samuel Lunenfeld Research Institute (SLRI) at Mount Sinai Hospital.

While many conditions don’t manifest themselves until adulthood, researchers at the Fraser Mustard Institute will be examining what occurs years or even decades earlier.

“Rather than trying to treat the symptoms, we’re better off trying to prevent them in the first place, and we have a very real prospect of doing that in the first 2,000 days of life,” says Lye.

He emphasizes that what happens during that crucial time—from conception to around age five—can set a child on trajectories that will impact his or her entire life.

Those far-reaching effects encompass not only physical and mental health but also the ability to learn and the capacity to form positive social interactions. Traditionally, research has been divided into discrete “silos” of health, education and social sciences. But the Fraser Mustard Institute removes those barriers.

“Our belief is that a developing individual doesn’t separate his or her health, learning part or social functions,” says Lye, who holds the Canada Research Chair in Improvement in Health and Function. “Studying these aspects together will allow innovations to emerge rapidly.”

While attracting researchers from various areas of human development, the initiative has also recently attracted the attention of an international superstar whose field isn’t science at all, but professional sport.

National Hockey League legend Mats Sundin (centre, below) former captain of the Toronto Maple Leafs, feels so passionately about the issues that he has established fellowships for an elite exchange program for two scientists in developmental biology between 91�Թ� and Karolinska Institutet in his home country of Sweden. Beginning in September, one candidate from each university will be chosen to do a year of postdoctoral research at the other’s institution.

“I’m really excited about being able to get involved and give back to two of the best research centres in the world,” says Sundin.

The early years have long been an area of interest for Sundin, son of a pediatric nurse.

“Over my years in Toronto I had a big involvement in different charities, but what kept me coming back was children,” he says.

He often visited young patients in hospital, and he started Captain’s Corner, where kids dealing with life challenges had special box seats to watch hockey games in Toronto’s Air Canada Centre.

“When I was part of a seminar on sports and health at Karolinska, I started thinking about ways I could support research that could help children in the early stages of lif," says Sundin, who now lives in Sweden. "It was important for me to give back in Sweden, but maybe even more important in Toronto, where I spent most of my career.

"Toronto really feels like my home.”

He was encouraged to learn that 91�Թ� and Karolinska already had academic partnerships, so his involvement was an easy fit.

There are surprising parallels between elite scientists and elite athletes, says Sundin, who will be inducted into the Hockey Hall of Fame in November, and had his number 13 jersey honoured in a Toronto ceremony in February.

He says, “When you’re a professional athlete you’re always trying to be on the edge, at the forefront, collaborating with your teammates but having that competitive drive to be the best.”

Sundin now has a new reason for his interest in the well-being of children: his wife Josephine gave birth to their first child, a baby girl, in August.

Sundin has personally donated more than $300,000 for the fellowships, matched by 91�Թ� and Karolinska, with another $50,000 from Maple Leaf Sports and Entertainment. But Sundin’s involvement goes far beyond money, says Lye, who will oversee the fellowships from the 91�Թ� side. Sundin has made several personal appearances (when he announced the fellowships earlier this year he proudly brought his entire family to 91�Թ�, including his parents and siblings), he is helping to fundraise, and he inspires young people to think about careers in science and research.

“Professional hockey is all about excellence and attracting the best talent from around the world, and so is our institute," says Lye. "Having Mats Sundin involved offers us a great opportunity to get our message out.”

Indeed, Sundin’s announcement generated widespread media attention, which is shining a spotlight on various research initiatives in 91�Թ� Medicine that are having an international impact.

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Much of the research focuses on the interplay between genes and the environment. Whereas the genes that we inherit were once thought to be our destiny, it’s now believed that they interact with the environment in ways that can alter their expression. Those environmental influences, both positive and negative, may include nutrients, contaminants, medicines, stress, stimulation and potentially thousands of other factors.

Lye’s own research, in an international collaboration with colleagues in Perth, Australia, involves a huge dataset of 3,000 children who have been genotyped and followed from age 18 weeks to age 21 years. The researchers, led by Dr. Craig Pennell, found that those children born with a specific genetic variant that predisposes them to obesity had a higher than normal body mass index as early as age seven.

“But the really interesting bit,” Lye says, “is that if the mother exclusively breast-fed for the first three to six months, the children with the adverse variant had a normal BMI by age seven.”

That finding, by SLRI investigator and 91�Թ� Dalla Lana School of Public Health Professor Laurent Briollais, shows that in the right environment, adverse effects can be mitigated, says Lye. A large part of the research is determining exactly what the “right” environment is in every instance to produce optimal outcomes. To that end, the Fraser Mustard Institute is spearheading another initiative called the Ontario Birth Study. It is recruiting women to take part in an observational study that will follow them through their pregnancies, then follow their children through early childhood and beyond.

“It will be a living laboratory, and I think it’s going to be a remarkable resource,” Lye says.

Obesity, which carries higher risks for diabetes, heart disease, stroke and some cancers, is a major cause of disability around the world. But another leading cause of disability is depression. Physician-researcher Valerie Taylor is investigating how these two disorders—obesity and depression—are connected.

“I’m interested in what comes first,” says Taylor, Head of 91�Թ�’s Division of Women’s Mental Health and Psychiatrist-in-Chief at Women’s College Hospital. “And I keep going back further and further, to early fetal programming and what’s happening in utero.”

Taylor emphasizes that not everyone with depression has a weight problem, and not everyone who is overweight has a mental illness. But she says several links have been found. For example, fat tissue, which is biologically active, contains the stress hormone cortisol. Elevated cortisol levels are common in people with depression. And, in what may be a vicious circle, excess cortisol leads to an accumulation of abdominal fat. Likewise, many antidepressants and antipsychotics lead to weight gain, and yet people with depression may lack the energy or motivation to plan healthy meals or pursue physical activity.

To complicate the issue further, these drugs cross the placenta to the fetus, and the effects aren’t fully understood. What is known is that significantly overweight children are at much higher risk of developing a mental illness as they get older, and children with a mental illness are at much higher risk of becoming obese.

This connection has major implications not only in Canada, where almost two-thirds of Canadian adults are overweight and one in four will experience depression, but also worldwide, where these two conditions are increasingly spoken of as a “double epidemic.” Early interventions may potentially include specific antioxidants or behaviour modifications for the pregnant woman that could have protective effects for the fetus, says Taylor.

More research is needed, but Taylor, a member of the Fraser Mustard Institute, believes the answers lie in studying the early years. “For me, looking at the first 2,000 days is essential for understanding the next 90 years.”

One of the driving forces in genetics research is better, cheaper technology. Stephen Scherer (below) is professor of Molecular Genetics, director of 91�Թ�’s McLaughlin Centre and one of the world’s top autism researchers.

“Technology is moving at a breakneck pace,” Scherer says.

Eighteen months ago, as part of the international Autism Genome Project to analyze the genes of 10,000 families with autism diagnoses, Scherer’s lab was able to sequence only 1.5 per cent of all DNA in a genome. This past summer, they could sequence the entire human genome within a couple of weeks at a cost of $5,000. This fall, with new technology they will complete the same process within a couple of hours for $1,000.

Some of the results have been stunning.

“The new story is that genes we’re finding in our autism studies are also being found in schizophrenia, attention deficit hyperactivity disorder and bipolar disorder,” says Scherer, who holds the Glaxo-Smith-Kline Chair in Genetics and Genomics and is also the director of the Centre for Applied Genomics at The Hospital for Sick Children.

Several studies are looking at why the same genes lead to one condition over another. Since many of the genes are involved in the same genetic pathways, there’s a very real possibility that drugs that work for one condition may be useful in another. But since Scherer’s work suggests that people with autism—and perhaps schizophrenia too—each have their own individual genetic form of the condition, it’s important to translate the data for families in order to personalize treatment.

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While studying common conditions of childhood can yield significant data, conversely so can studying rare disorders.

Department of Paediatrics Professor Berge Minassian, who holds the Michael Bahen Chair in Epilepsy Research and is also a Scientist at SickKids, studies a rare, neurodegenerative form of epilepsy called Lafora disease. Affecting one in 200,000 people, it’s a fatal seizure disorder that progresses rapidly to constant seizuring and dementia, and leads to death about 10 years after onset.

Although symptoms don’t show until age 13 or 14, the roots of the disease begin much earlier. Minassian’s lab discovered the two gene defects that cause the disease by producing an accumulation of glycogen in the brain.

“We’re actually very close now to having an almost complete understanding of all the steps of the disease,” Minassian says. But one of the barriers to progress is the difficulty of getting funding to research a disease like Lafora.

“People think these diseases are too rare to fund," he says. "But these rare diseases are gems for research. They give us precise views of what happens when one specific piece is affected.”

Minassian says the study of Lafora will increase the understanding of other, more common forms of epilepsy. Moreover, since the brain is continually changing and developing in the early years, animal studies are helping to determine the optimal time for drug intervention to prevent or mitigate the disease. Minassian’s lab is also studying a rare form of infant-onset Parkinson’s disease, which may have implications for the much more common adult-onset form.

At 91�Թ� Medicine, it’s not just about research; it’s about outcomes, says the Fraser Mustard Institute’s Lye.

“We don’t just want to do research,” he stresses. “We want to take our research and the information that’s already out there and apply it to improve the health, learning and social function of children.”

With its interdisciplinary approach and global reach, Lye says 91�Թ� has the potential to be the world leader in looking for best practices around the globe and applying them to significantly improve the lives of children, and the adults they will become.

“The biology that takes a single fertilized egg to a child who can learn in school in a few short years is nothing short of a miracle,” Lye says. “We’re committed to finding how to make that development optimal so that children will be set on trajectories that are optimal for life.”

The Fraser Mustard Institute involves 91�Թ�’s Faculty of Medicine, 91�Թ� Mississauga and Scarborough, the Faculty of Arts & Science and the Ontario Institute for Studies in Education, and links into several of 91�Թ�’s partner hospitals. It is named for Dr. Fraser Mustard, the internationally renowned physician and scientist who passionately campaigned to bring the world’s attention to the importance of the earliest years of life.

To mark its official opening, the Fraser Mustard Institute is hosting the Connaught Global Challenge International Symposium from September 27 to 29, where national and international scientists will speak on “Investing in Mothers and Children: Developmental Trajectories, Health, Learning and Society.”

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Saving lives, one death at a time

sgupta — Mon, 19 Dec 2011 15:50:29 +0000

Saving lives, one death at a time sgupta Mon, 12/19/2011 - 10:50

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91�Թ� epidemiologist Dr. Prabhat Jha is exploring causes of death in India, a country where death certificates are not the norm. (Photo by Caz Zyvatkauskas)

Marcia Kaye

Author legacy

Marcia Kaye

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Subheadline

What one of the world’s largest mortality studies is teaching us about public health

In their quest to track health patterns across populations, epidemiologists often call themselves “disease detectives.” Not the 91�Թ�'s Dr. Prabhat Jha. He uses a somewhat more radical term to describe the work that he and his team are doing. “I like to think of ourselves as epidemiological terrorists,” he said jovially. “We blow up assumptions.”

Here’s one example. It concerns malaria, a disease that the West doesn’t pay much attention to. The World Health Organization (WHO) had long been reporting that in India, malaria claims 15,000 lives a year – a significant but not overwhelming loss in a nation of more than a billion people. But Jha learned that the WHO figure was based solely on patients who receive proper diagnoses from clinics or hospitals. Jha, who was born in India, was well aware that such a statistic would exclude many rural and poor Indians with no access to formal medical care. So, more than a decade ago, he set out to design a different system for gathering data. The Million Death Study, which Jha launched in 2002, began sending trained teams to homes across the country to conduct door-to-door surveys about recent deaths.

This method has produced startling new findings. A paper Jha published in fall 2010, for example, indicates that the death toll from malaria is an astonishing 200,000, or 13 times the WHO estimate, most of them adult deaths. And that’s just India. Jha believes that many other countries, especially in Asia and Africa, may similarly be basing their public health policies on incorrect statistics. “Deaths from malaria in our view have been vastly underestimated worldwide,” Jha says, suggesting a total death toll of close to 1.3 million – 50 per cent higher than the WHO’s estimate. Jha believes that at least 200,000 malaria deaths among adults in Africa currently go unreported.

Here’s another widely held assumption that Jha is challenging: the United Nations had been reporting in the mid-2000s that 400,000 people in India die of HIV-AIDS every year – more than any other country. The numbers had been based on clinical testing for HIV in young pregnant women. But Jha’s team found that the figure is likely far lower, probably closer to 100,000. That’s good news, especially as Jha has published widely on HIV-AIDS prevention. But if malaria kills twice as many people as HIV-AIDS, why does malaria receive only a fraction of the attention? Jha is determined to redress that inequity.

“HIV-AIDS is something we treat, but malaria is something we cure,” he said, citing the now-standard combination drug therapy that can cure malaria if given promptly. The drugs are free in Indian public clinics and affordable in private ones. “Those malaria deaths should not occur. That’s why these findings are exceedingly important. What gets measured is what gets done.”

The findings on malaria and HIV-AIDS are only part of Jha’s Million Death Study, one of the largest studies of mortality ever undertaken anywhere in the world. Jha, the founding director of the 91�Թ�–affiliated Centre for Global Health Research, created and designed the study to focus on India – a country that doesn’t require death registration and where most deaths occur at home without medical attention. Jha believed that visiting individual households and talking directly with family members was the only way to acquire the necessary information about how loved ones died. Not that he’s obsessed with death, he points out, so much as with death numbers. “People say to me, ‘Don’t you do depressing work, just concerned about deaths?’ Actually, no. By studying the dead you can get a real sense of the opportunities of life. The best investment for the health of the living is to count the dead.” Indeed, it was the data on lung cancer deaths in the West in the 1930s and ’40s that led to the link with smoking, and it was the statistics on unusual diseases killing young men in California and New York in the early 1980s that led to the identification of HIV. Public health measures ensued, preventing millions more deaths.

Jha, the Canada Research Chair in Health and Development at 91�Թ�’s Dalla Lana School of Public Health and the university’s Inaugural Endowed Professor in Disease Control, has long been fascinated by the power of mortality statistics to drive global health initiatives. Born in the industrial city of Ranchi in central-east India, he immigrated at age six with his family to Winnipeg, where his father worked as a civil engineer (and is now an NDP member of the legislative assembly) and his mother raised Jha and his older brother and younger sister.

Jha, with twin interests in medicine and economics, received his medical degree from the University of Manitoba, then a doctorate in epidemiology and public health from the University of Oxford in England, where he studied as a Rhodes Scholar. It was during his time at Oxford that he became aware of the extent of the miseries of the global poor, when world-renowned epidemiologist Sir Richard Peto, Jha’s professor and mentor, spoke passionately about the huge burden of disease in developing countries from completely preventable factors, such as tobacco. It motivated Jha to want to research the issues further, and then turn that research into action.

While working in the mid-1990s at The World Bank, whose mission is to provide loans and resources to improve lives of people in developing countries, Jha chose India to study the link between smoking habits and smoking-related illnesses and deaths. Not only did he have a cultural connection, but he was interested in the impact of smoking in a country that was undergoing a massive transformation, with rapid development, increasing urbanization and a growing middle class.

Jha discovered that Indian smokers tend to pick up the habit at a later age than smokers in the West. They tend to smoke less, and often still smoke locally manufactured cigarettes called bidis that contain only one-quarter of the tobacco of western commercial brands. Were Indian smokers therefore causing less damage to themselves than smokers in the West? While smoking mortality studies had been done in developed countries, no one knew the health impact of smoking in India.

Jha met with India’s registrar general, whose government department oversees that country’s census, to suggest a simple proposition: include a mention on an individual’s death certificate of whether the deceased was a smoker or a non-smoker. But with only about 20 per cent of India’s estimated 10 million annual deaths reliably registered, millions of people would still be missed. How, then, to reach those next-of-kin to ask about their deceased loved ones? “That’s when we came up with the idea to apply verbal autopsy,” Jha said.

Verbal autopsy involves asking family members about the events that preceded the death. Countries have long relied on information gathered through in-person household surveys. Such a method in India could go far beyond asking about smoking habits, Jha realized, and inquire about a range of signs and symptoms involving every deceased below age 70. (The cause of death among older people is more complex to ascertain, as there are often multiple symptoms.) This method had never been used on the scale Jha envisaged. Death is such a formidable event, he says, that it stays imprinted in people’s memories.

“Just think back on your own family experience of death, and you’ll find you remember the details even years later,” he said. When he asked his own grandmother, who lived in a rural village in India, about how his grandfather had died 20 years earlier, she recalled the details so vividly that Jha immediately identified the classic symptoms of a stroke.

India already had a “sample registration system,” in which government-paid census takers would make monthly visits to each of about 200 homes in their district to ask about births, deaths and other changes in the household. Every six months an independent surveyor would repeat that work, to confirm the accuracy. Piggybacking on that system, Jha designed the Million Death Study to use those twice-yearly surveyors and train 800 of them to do verbal autopsies in 7,000 districts across the country. Their completed questionnaires would then be sent to two of 130 physicians to establish a probable cause of death. In case of disagreement, a senior physician would be the final arbiter.

Jha says the study, which coded 300,000 deaths in its first five years, has exceeded his expectations. The participation rate of the communities is close to 100 per cent – at least as high as Canada’s response rate of 98 per cent in the 2011 census. Jha, who speaks Hindi and who has accompanied field staff on home visits, says communities have been quick to recognize the legitimacy of the study. While residents may be leery of a drug company rep, they trust the government field staff who tell them upfront that while the study probably won’t be of direct help to the respondent, it may help identify health priorities that will benefit the community and may improve their children’s or grandchildren’s lives. Households become willing participants, offering warm hospitality and cups of chai. Jha said that in a sub-study of selected households on blood pressure, the participation rate was 105 per cent.

“The neighbours showed up, clamouring over each other to say, ‘Why aren’t you including us?’ So we just included them all.”

He adds that Indians also respond well to the study’s connection with the 91�Թ�, an institution they respect that’s situated in a city where everyone, even those in the smallest Indian towns, seems to have a cousin.

Since 2005, the Million Death Study has produced 15 publications in major medical journals such as the Lancet, the New England Journal of Medicine and the British Medical Journal, as well as four major reports in both India and Canada. The publication of each new finding has resulted in a hail of publicity, with crowded media conferences, TV reports and front-page headlines in India and beyond.

Smoking was named a much bigger risk than previously thought: Jha combined his own findings with government statistics to report that 70 per cent of smoking-related deaths occur in middle-aged people aged 30 to 69; even a few bidis or cigarettes a day may be lethal; smoking is a leading cause of tuberculosis; and oral cancer, highly related to smoking and chewing tobacco, is higher in women than men. Citing these results in Parliament, the country’s health minister successfully introduced warning labels on cigarette packages, soon followed by higher tobacco taxes.

Jha and his researchers also found that while selective abortion of females following prenatal sex determination is growing in this country that favours boys, families generally don’t act on it with the first pregnancy. If that child is a boy, families will often happily accept a second child of either sex. But if that first child is a girl, a significant minority, especially among educated wealthy families, will opt for selective abortion with the second pregnancy in their quest for at least one boy. The study, to which media outlets attached the headline “Ten Million Missing Girls” (now up to an estimated 12 million over the past 30 years), has caused an ongoing heated debate in India that has reached into popular culture, Jha said.

“The Indian soap operas have started covering this issue, with the strong-willed pregnant daughter-in-law resisting pressure from her equally strong-willed mother-in-law and the husband in between.” He added that evidence is emerging, partly as a response to the debate, that the practice has begun to slow in the northern states.

Among the most recent findings from the Million Death Study: the number of suicide deaths in India has been underestimated, especially among the 15–29 age group; unintentional injuries such as drowning kill more than 82,000 children under five every year, which is up to three times more than previously thought; and simple, affordable prenatal care could prevent one million newborn deaths caused by prematurity, infections and birth trauma.

The study has raised not only awareness but also controversy, particularly with regard to the malaria findings. The World Health Organization, whose malaria numbers looked like an embarrassingly low underestimate, came out with a statement asserting that while verbal autopsy may be efficient for some causes of death, it’s poor at differentiating malaria from other fever diseases, such as septicemia, encephalitis or pneumonia. Nata Menabde, the WHO’s representative in India, told reporters,

“The new study uses the verbal autopsy method, which is suitable only for diseases with distinctive symptoms and not for malaria.”

But other specialists have hurried to the study’s defence. Dr. N.K. Ganguly, the former director of the Indian Council of Medical Research, says that while some may question the reliability of verbal autopsies, there’s no denying that the results correlate with local doctors’ reports as well as with the seasonal variability of mosquitoes. And Dr. Roger Glass of the U.S. National Institutes of Health said, “It’s important that we not underestimate malaria deaths, particularly among adults living in rural areas.” He added that the study indicates that population-based disease surveys are valuable.

Jha, who in the early 1990s served as senior scientist at WHO, says that the Indian government has now set up an independent task force to verify malaria deaths. He said, “I think they’ll come up with something much closer to our estimate than the WHO estimate, and that in turn will get the government to say, ‘We should do something about it.’”

The Million Death Study is scheduled to continue until 2014, but Jha predicts that because the data-gathering system is solidly in place, data collection will continue well beyond that year, eventually coding many more than one million deaths. He expects future findings may cover health data that have previously gone unnoticed or under-reported. For instance, although coronary heart disease is considered to be the leading killer in wealthy, developed countries, it’s also proving to be the No. 1 cause of death among poor, rural Indian men aged 30 to 69.

Another area of interest is the role that alcohol may play in causing disease or accidental deaths. Alcohol consumption has been difficult to track in India because home production for self-use remains common. The study is also finding that snakebite deaths could be up to three times higher than current estimates, as many victims never make it to a clinic.

Currently logging four or five annual trips to India, Jha, a married father of two school-age daughters, plans to cut those visits back – especially as the Million Death Study becomes more automated and self-sustaining. He plans to turn his sights toward rolling out the program to other countries. The government of South Africa has expressed a keen interest, and several other African countries as well as China are lacking accurate death statistics.

“My dream project would be not the Million Death Study,” Jha said, “but the Ten Million Death Study.”

This story first appeared in 91�Թ� Magazine.

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