Annual Report 2006-2007

[ Table of Contents ]

Touching Lives

Autism
I Would Walk the Earth for That Man

Rehabilitation
Only You Can Fail Yourself

Dementia
My Dad Probably Wouldn't Be Here Today

Breast Cancer
I Didn't Have Time to Fall Apart

Wait Times
As Different as Night and Day

Workplace Health and Safety
No Time for Injuries

Chronic Pain
The Future Belongs to People Who Have Dreams



Autism

I Would Walk the Earth for That Man

Judy Wright lives in London, Ontario, along with her husband Rob and their two children, Alex (4) and Olivia (18 months). She works part-time as a developmental service worker for children with physical and developmental disabilities. When Alex was just six months old, Judy became suspicious that he had autism. With help from CIHR-funded researcher Dr. Lonnie Zwaigenbaum, the family was able to confirm this diagnosis, helping them to get the care and the support they need. Dr. Zwaigenbaum's research has also helped reassure the family about Olivia's early development.

When Alex was still in his crib and awake for the day, Judy would sit there watching him, waiting for Alex to look at her before she would take him out. Her family thought she was cruel, but she was simply doing what she knew was best. This was confirmed when Alex was diagnosed with autism.

"I'd stand in front of his crib. I'd dance a little jig. But there was no response. I needed him to look at me, to realize that he needed Mommy. It was really hard, sometimes it would be 20 minutes, a half an hour waiting for him to look at me, acknowledge me. And we'd do this for everything," Judy recounts.

Alex turned 4 in September. He is getting the care he needs and has made dramatic improvements. Instead of backing into mom or dad with his arms at his side, Alex's previous way of hugging, he is learning to give hugs facing people with his arms open. He can say, Mama, Dad, More, Yes, No and Hi. Alex's sister, Olivia, does not have autism, a major relief considering that having one child with the condition increases the risk that future children will have it too.

Ask Judy and she'll tell you that a lot of the credit goes to a researcher named Dr. Lonnie Zwaigenbaum.

Dr. Zwaigenbaum, now at the University of Alberta in Edmonton but previously based at McMaster University in Hamilton, was part of a CIHR-funded team of researchers who developed a unique tool for detecting autism at a really early age. Judy and Alex met Dr. Zwaigenbaum when Alex was just 12 months old. As it turned out, it was just in time.

"Lonnie saw him and said he was at a fork in the road. He could improve or he could get worse. It was difficult because we had been working so hard with Alex, but the chance he may get better and not have autism gave us hope," she remembers.

Judy continued to work with Alex, trying to change the course of the autism.

A second visit with Dr. Zwaigenbaum when Alex was 18 months resulted in a firm diagnosis of autism - a diagnosis neither her family doctor nor the pediatrician had been able to make.

Dr. Zwaigenbaum also offered to write recommendations to help convince the Thames Valley Children's Centre in London to allocate a spot for Alex immediately, as there was a two-year waiting list for services. "Alex was going downhill fast," Judy says. "Dr. Zwaigenbaum diagnosing Alex at such a young age put us in the right place at the right time." He now receives 28 hours a week of in-home Intensive Behavioural Intervention therapy from four therapists, and goes to Junior Kindergarten two mornings a week.

After an in-depth discussion with Dr. Zwaigenbaum about the statistics on siblings born with autism, Judy became pregnant with Olivia. She describes the experience as "nine months of being terrified" that the child would have autism like her brother. "With her, you were constantly watching and looking. With him, it just happened, so you had no time to be prepared," she reflects.

Olivia also went to see Dr. Zwaigenbaum as part of a unique study of children who have siblings with autism. In Olivia's case, it meant that they were able to follow her from the outset to see if there were any early signs of autism. So far, nothing has appeared; however, Olivia will go for more check-ups when she's 2, 3 and 5 years. "I'm just thankful that a team of experts are monitoring things," Judy says.

For Alex, having a younger sibling has resulted in many benefits. The two children play together and Alex is learning to respond to his sister, which is teaching him how to respond to others.

Judy has nothing but praise for Dr. Zwaigenbaum.

"I would walk the earth for that man. Alex wouldn't be doing as well and getting the therapy he needs without him."

"We wanted a big family but we're stopping at two. We've been blessed."

Earlier Diagnosis Can Make the Difference

Drs. Susan Bryson of Dalhousie University and Lonnie Zwaigenbaum of the University of Alberta are well-known in the autism research community. The two have worked together to develop a new tool called the Autism Observation Scale for Infants. The scale helps systematically track behaviours associated with autism. While it does not provide a diagnosis of autism, it helps identify early behaviours that may indicate a risk of autism, such as not smiling in response to the smiles of others, not responding to one's name and delayed language. The scale, which has been disseminated to pediatricians across Canada, can pick up signs of autism in children as young as 12 months, an accomplishment previously not thought possible.

Early detection maximizes the chances of early diagnosis and early treatment. In fact, Dr. Bryson will soon be starting a pilot program to study the effectiveness of treating children as young as 15 months old identified as requiring help, based on the results of the observation scale. Both researchers are also working on a unique project studying the siblings of children with autism. The research involves approximately 300 children from Nova Scotia, Ontario and Alberta; the kids will be closely followed until they reach five years old. Drs. Bryson and Zwaigenbaum both stress the impact on families. "This is a very special study. For families, the stakes are high because they are aware of the recurrence risks associated with autism. What we learn from the research assessments may have profound implications for their children's futures and may also create opportunities to intervene and change the course of their development," Dr. Zwaigenbaum notes.

Two Canadian researchers are part of an international team that has pinpointed several new regions of DNA thought to cause at least some cases of autism in children. Dr. Stephen Scherer of Toronto's Hospital for Sick Children and Dr. Peter Szatmari of McMaster University were part of a group that used genome-scanning technology to find regions in the genome linked to autism susceptibility genes. Their work will help researchers better understand autism and could lead to improved diagnosis and treatment for patients and their families.

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Rehabilitation

Only You Can Fail Yourself

Born in Restigouche, Quebec, Cecil Condo now calls Whycocomagh, Nova Scotia, home. Cecil lives on the reserve in a house overlooking Cape Breton's Bras d'Or Lakes with three dogs, Blue, Smokey and Blacky. Even though he's been in a wheelchair for more than six years, he's been known to surprise innocent bystanders at the pool hall by how quickly he can rack up balls - and winnings. Cecil has also raised eyebrows when he does a wheelie on his wheelchair. Most people would think that the safest place for a wheelchair is planted firmly on the ground, but CIHR-funded researcher Dr. Lee Kirby and his colleagues at the Nova Scotia Rehabilitation Centre (NSRC) have taught Cecil and many others that popping a wheelie is a useful and necessary way of getting through life's many obstacles.

In his 63 years of life, Cecil hasn't let much get him down or, if he did, it was never for long.

He relied on his positive attitude to sustain him through nine hard years of residential school in Shubenacadie, Nova Scotia, far from home and his parents for years at a time. He used it during his time as a paratrooper and later when his first marriage ended. So, he certainly wasn't going to let a wheelchair get him down. That wouldn't go with his philosophy in life.

"Nobody can fail you, only you can fail yourself," Cecil believes.

More than six years ago he was admitted to the North Sydney Hospital for an operation to help restore the circulation in his legs. When he woke up, however, his left leg was numb. The doctors tried another surgery, but then the right leg started to bother him even worse than the other leg. Out of options, Cecil took the initiative and proposed an amputation. "I said 'I tell you what, you cut it off here'. I pointed to a spot just below my knee, they made a mark, and that's pretty much where they cut it off," he says.

Cecil says he anticipated that they were going to have to amputate part of his leg but, all the same, it's not something he had really prepared for. He was living in a one-bedroom house at the time which was not wheelchair accessible (he now has an accessible house on the Whycocomagh reserve). And, he had to wait for almost a year before he had the chance to get into a full-time rehabilitation program at the NSRC in Halifax and met Dr. Kirby, a Dalhousie University professor.

"I can't say enough about Dr. Kirby and that program. That man is a saint," declares Cecil.

For 30 days, Cecil was put through his paces as part of the rehabilitation program. In addition to being fitted for a prosthetic leg, the program included daily workouts in the gym and the pool, weights and, the most unique part of the routine, a skills-training program on an obstacle course for wheelchairs.

Navigating the course meant going through gravel, over curbs and uneven surfaces. It also demanded the use of a key wheelchair technique - popping a wheelie.

Cecil says the wheelie has proved a lifesaver. "It's an important technique for people - when you're in a tight situation, you have to do a wheelie," he says. "Once I started doing the wheelie, I thought, 'OK, here I go.'"

The program was hard work. "You're not going to make it unless you have an open and good attitude," Cecil stresses.

With his increased confidence and mobility, he started doing things again that kept him active and happy, such as playing in pool tournaments with his late friend Malcolm. He developed a unique style for shooting pool, standing with his good leg and resting his amputated leg on the seat of the wheelchair. "Boy we had some good times going around shooting pool," he reminisces.

Unfortunately, he had to return to the NSRC a second time after suffering a stroke that left him paralyzed on the left side. By the time the program finished, Cecil estimates he had regained about half the function back and now is almost completely back to normal. "I was a bit discouraged that time, but the staff kept me going," Cecil admits.

"Dr. Kirby has got a great team. I'm sure that 90% of people that go there will come out better," he says. All it takes is the right attitude.

Getting Over Life's Obstacles

A door threshold, a rug, grass or a curb; almost all people on foot would have no problem with these, but for wheelchair users, they can be major obstacles, catching their front wheels until they are stuck and unable to move. In 1996, Dr. Lee Kirby and his Wheelchair Research Team of Dalhousie University and the NSRC began developing and testing a training program to help wheelchair users get past these obstacles. Dr. Kirby's research has shown the program to be safe, practical, inexpensive and efficacious in a rehabilitation-centre setting.

According to Dr. Kirby, improving mobility is often as simple as shifting weight to the rear wheels, freeing the wheelchair's smaller front wheels and allowing the user to go forward. "Wheelies are not a party trick. In a wheelchair, getting up on the back wheels opens up all kinds of possibilities," he notes. Dr. Kirby says just 2-3 hours of training creates major improvements and, best of all, skills such as the wheelie will stay with the user for life.

"You can think of the Wheelchair Skills Program as similar to swimming lessons. It's based on science, but you don't need to understand the science to teach these skills or to learn them. It's a low-tech, high-impact intervention."

Details about the program are available free on the Internet (http://www.wheelchairskillsprogram.ca/). The program is now being used or at least tested in several provinces and is being adopted internationally. Dr. Kirby has also gone on to develop, with CIHR funding, a new device to prevent wheelchair tipping, called an Arc-RAD.

"Persons with disabilities need to learn the necessary skills and build confidence to handle a wheelchair. We believe now is the time to support efforts such as the Wheelchair Skills Program. It will act as a major support for persons with mobility disabilities as they work to achieve independence, self-reliance and full community participation." says David Shannon, Executive Director, Canadian Paraplegic Association (Nova Scotia).

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Dementia

My Dad Probably Wouldn't be Here Today

Heather Dyck spends much of her time keeping an eye on her aging parents, Fred and Norma Scrivens, who still live in their own home at 74 and 72, respectively. Heather, her husband, Norm, and her parents live in Birch Hills, a town of about 1,000 people in North Central Saskatchewan. With only one of her four children still at home, she's glad she has time for her parents. "They're my project, I guess you could say."

A year ago, Heather Dyck didn't think her father, Fred, would make it through the winter. He was unable to walk, had lost control of his bladder and was becoming increasingly forgetful. At the very least, she and her family were looking at placing him in a nursing home. Their family physician referred them to the Rural and Remote Memory Clinic, established as part of a CIHR-funded project to develop and evaluate strategies to enhance the care of seniors with dementia in rural and remote areas.

Heather had never heard of the clinic, which is located at the University of Saskatchewan. But, "when the nurse called and said what was going to happen, I couldn't believe we were going to get all those services in one day and in one place - it was incredible."

She and her parents saw a neurologist, a geriatrician, a neuropsychologist and a physical therapist and her father had a CT scan. At the end of the day, the entire team gathered together to give its diagnosis and recommendations for treatment.

Heather really appreciated the team approach, particularly given her father's multiple health problems, including heart disease and epilepsy.

"The team got together with us as a group, and that is incredibly important and incredibly rare. We've had problems before with one doctor not talking to another."

The diagnosis was the very one the family had suspected after some Internet research - normal pressure hydrocephalus. Normal pressure hydrocephalus happens when there is too much cerebrospinal fluid in the brain's cavities. The fluid, which normally protects and cushions the brain, creates pressure on it instead, resulting in the symptoms Fred was experiencing. Doctors surgically inserted a shunt to drain the fluid and now Fred is walking, he's regained his bladder control and his memory is "not great, but not as bad as it was," says Heather.

That's a good thing, since Heather's mother, Norma, has now become a patient of the Memory Clinic as well. She asked for the referral herself, after noticing she was starting to forget things and lose her keys too often. Norma's now been diagnosed with mild cognitive impairment but, having watched her own mother suffer from severe Alzheimer's disease, Norma is positive her problem is worse than it seems. Heather agrees.

"Now that she's a patient at the clinic, though, she's going to be able to get the help she needs, when she needs it," she says.

Heather now shoulders the responsibilities for her parents. She phones every day, makes sure appointments are written on the calendar and goes with them to the appointments since, she says, they won't remember what the doctor tells them otherwise.

"They're making do in their own home, with a little bit of intervention they don't even know they're getting," says Heather. "They get along, they just need a little bit of help sometimes."

The help she got from the Memory Clinic was invaluable. First, the clinic put everything together into a one-day visit - no small matter when you have to travel two hours to get there.

The day-long visit wasn't the end of it. The team follows up after six weeks and again at the three-, six- and 12-month marks. Using Telehealth helps to minimize the burden of travelling into the city. They will help arrange any follow-up services that are needed, such as home care or physiotherapy. As well, Heather and her parents have the nurse's phone number, so they can call at any time with any concerns.

"The bottom line for us," Heather says, "is that without the clinic, we would have had no place to turn. And when you're north of nowhere, it's nice to know which direction to go for help."

When Care is Far Away

A quarter of Canada's seniors live in rural areas. With the prevalence of dementia expected to double in the next 30 years, there is a growing need for specialized services and personnel. Strategies to Improve the Care of Persons with Dementia in Rural and Remote Areas is a CIHR-funded project led by Dr. Debra Morgan from the Canadian Centre for Health and Safety in Agriculture at the University of Saskatchewan. The team has developed, implemented and is evaluating the Rural and Remote Memory Clinic as a unique one-stop destination for dementia care, with close ties to Telehealth for follow-up care. The team's work has improved access to specialized care for seniors, while reducing the burden of travel for multiple purposes, such as assessment, diagnosis and follow-up.

The team has also conducted an evaluation of the Enhancing Care program in two rural nursing homes. This program was designed to help nursing homes implement the Guidelines for Care developed by the Alzheimer's Society of Canada. Another area of focus is dementia among northern Aboriginal populations, where issues surrounding care are quite different. These studies are developing and evaluating culturally appropriate assessment protocols, examining access to care in remote northern communities and exploring dementia care issues with nurses employed in these communities.

"Research is absolutely central to giving us the tools we need to defeat Alzheimer's disease. The Alzheimer Society of Canada and CIHR are partners in ensuring that important research is funded. While I truly believe that we will, one day, as a result of this research, be able to prevent or cure this devastating disease, we need to know more about how to treat those who have the disease now. We need to prolong their periods of high-quality life and ensure they get the care they need. Dr. Morgan's research is helping us learn how best to do this with an important group of seniors - those who live in rural and remote areas." Says Dr. Jack Diamond, Scientific Director, Alzheimer Society of Canada.

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Breast Cancer

I Didn't Have Time to Fall Apart

Dana Markoff is 47 years old. She lives in Brampton, Ontario, with her husband and her four daughters, aged 12-22. She is a dynamo of activity. She spends every morning at fitness class and lunch times at the local primary school as a lunchroom supervisor. Before and after school she provides daycare to neighbourhood children. She sells Avon. And, in her spare time, she and her husband coach her youngest daughter's baseball team. Four years ago, a mammogram detected a lump in her breast. Two surgeries and a course of radiation therapy later, she's in good health.

Dana's mother made sure her three daughters knew about the importance of regular mammograms. Mother really does know best. From the age of 37, Dana went for a mammogram every two years. And on the fourth mammogram, when she was 43, the mammogram detected a growth.

That was her first piece of luck.

"I had no symptoms. It didn't hurt, I had no lumps, no bumps, no discharge, nothing. If I'd waited until I had symptoms, it would have been much further along and the cancer would have travelled," she says.

After two surgeries to remove the lump, she was sent to Dr. Jean-Philippe Pignol at Sunnybrook Health Sciences Centre. That was her second lucky break. Dr. Pignol offered her the chance to participate in a clinical trial of a new method of delivering radiation therapy that he had developed. The treatment, called intensity modulated radiation therapy (IMRT), is less toxic to the skin, reducing the chance of burning. Dana took him up on the offer. That meant that she would be randomized to receive either the regular treatment or the IMRT.

"I didn't know which treatment I got, but I could tell by the way that I didn't react to anything - I was pretty sure I had the good one," she says. "There was another lady I used to see - her treatment was either before or after mine. And she was having a really hard time of it, with lots of blistering. Meanwhile, I hosted Christmas dinner that year. I had twenty-some people over, with one treatment still to go."

The IMRT gets part of the credit for what Dana calls a "manageable" experience. She's convinced, though, that her attitude also played an important role.

"I had a good attitude," she says. "I joked about it. It's either that, or you fall apart. And I didn't have time to fall apart - I had four kids to look after."

Dana also coped by making the therapy part of her regular life. She'd take her children to the hospital with her when she went for treatments - except for the oldest. She had thyroid cancer when she was 10 and, while she's healthy now, she's had enough of hospitals, Dana says.

But while breast cancer treatment was just part of life, having breast cancer has changed Dana.

"I'm much more aware of what's going on around me. And I'm much more vocal about telling people to go for their checkups and tests. Fifty is way too late to start mammograms."

And like her mother before her, Dana will make sure that her four daughters all get regular mammograms - starting early.

A Better Way to Treat Breast Cancer

Women whose breast cancer has not spread beyond the breast are generally treated by a lumpectomy, followed by radiation treatments five times a week for several weeks. The treatment can be as unpleasant as the disease, causing the skin to become red, itchy and tender. In half of women who undergo it, the radiation causes the skin to be burnt right off.

Dr. Jean-Philippe Pignol of Toronto's Sunnybrook Health Sciences Centre proposed a better way to deliver radiation that is less toxic to the skin. Intensity modulated radiation therapy (IMRT) was tested in more than 350 women, as part of a CIHR-funded clinical trial. Half the women received the standard "wedge" treatment, while half received IMRT. The results were dramatic. Women receiving IMRT were two to three times less likely to suffer painful radiation burns.

"I never realized how important it is for patients to be able to participate in a trial of a new technology that reduces side effects," says Dr. Pignol. "When women heard we were offering this, they asked to be referred to our clinics."

The study was one of the few multi-centre phase III clinical trial of a technology. Most clinical trials test medications. Today, IMRT has been accepted as the standard way to deliver radiation for breast cancer in hospitals across Canada.

"Ultimately, we want to cure women. But if we can improve the quality of the treatment they get as well, it's a huge step forward. Women have to go on with their lives, right through radiation treatment. We've been partnering with CIHR on breast cancer research since 1993, when CIHR was the Medical Research Council. Back then, breast cancer research funding across Canada was less than $2 million a year. Today, CBCRA alone is investing more than $13 million each year and it is making a difference. Without research in breast cancer, more women would be suffering and dying - that's the bottom line." Says Nicola Lewis, Executive Director, Canadian Breast Cancer Research Alliance.

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Wait Times

As Different as Night and Day

Bud McLean, 70, retired in 1998 from a career as an engineer in the oil industry in Calgary. His wife, Geri, 60, a former teacher, is also retired, leaving the couple lots of time to enjoy their main interest - travelling. Bud has two sons, aged 47 and 44, and seven grandchildren. Bud has had both hips replaced, the first in 1999 and the second in 2005, as part of a pilot project to improve patient care and reduce wait times. Geri has taken care of him through both surgeries.

Bud and Geri have travelled the world. They've been all over Europe, gone through much of Asia, explored South America and, just last year, visited one of their sons, a schoolteacher, in Mombassa, Kenya.

"That's why it's important to be able to walk around," says Bud.

Unfortunately, his body wasn't always up to the task. Twice, he had to have a hip replaced. And, he says, the difference between the two surgeries was like night and day.

The first time was in 1999. He had spent three months in the hospital battling a hip infection. Eventually, he had to have an operation to literally scrape the infected tissue out of his left hip. He had so little hip left after that, he says, it was just bone scraping on bone - no cartilage to ease the movement. Five feet, five inches tall, Bud weighed just 110 pounds (50 kilos) when he came out of the hospital. He had a new hip, but he was, Geri says, in terrible shape.

"He was totally emaciated when he came home," recalls Geri. "He was fragile to the point that I had to bathe one half of his body at a time, in the kitchen, with the oven on for heat and with the towels heated in the dryer."

It took him three months to progress from wheelchair, to a walker, to crutches, to short walks. He had minimal physiotherapy at home and used the specially adapted pool at the Vocational Rehabilitation and Research Institute to exercise.

Just a short while later, Bud began experiencing pain in his right hip. It took three years, however, for the hip to deteriorate enough to require a hip replacement.

That was the good news. The bad news was that the wait was likely to be at least eight months.

Then, he was invited to participate in an Alberta pilot project to reduce wait times for hip and knee replacement surgery and improve service quality and patient outcomes. In less than a month, he'd had his pre-operative preparation, had his hip replaced and recovered to the point that he was walking freely.

The secret, he says, was the coordination of all the services he needed through one case manager - known as a "shared-care approach".

"It all went so smoothly and I was so comfortable with what was going on before my operation, and it really was that one person, who coordinated everything for me."

"Everything" included meetings with Bud's physician, the surgeon and the physiotherapist. Bud attended a pre-surgery "school", where he learned what to expect and what he'd need after the operation, like a walker, crutches and a special seat that would allow him to use the toilet more easily. He learned about the exercises he would need to do - and, just as important, what not to do.

From there, it was straight to surgery, in just four days.

"I ran around, getting my x-rays, renting the equipment I needed, getting my blood typed. I even got a vitamin K shot to bring up my blood's ability to clot, since I didn't have a full week before the surgery to stop taking my blood thinners," says Bud. "I said to Geri and the nurse, 'I know I'm physically ready, but mentally, I haven't adjusted!'"

Bud was up and walking the day of the surgery, helped by a visit from the physiotherapist, and was home four days later. In less than two weeks, he was walking on his own steam.

Bud credits Geri for helping him: "She made sure I did my physiotherapy so I could recover properly."

Geri, on the other hand, says it was all Bud: "He really did take care of himself. He knew it was essential to his getting better and that I couldn't do it for him."

They both agree, though, that the new approach to care made all the difference in the world. Today, the only debates they're having are about their next trip - should it be Eastern Europe or Japan?

Innovative Approaches to Improving Care

Alberta's experiment with a coordinated approach to delivering knee and hip replacements has been so successful that three of the province's health regions, representing 80% of all such surgeries performed in the province, have adopted the approach - even before a final report is available.

The new approach is the product of research and design by the Alberta Bone and Joint Health Institute (ABJHI). Dr. Cyril Frank, former Scientific Director of CIHR's Institute of Musculoskeletal Health and Arthritis, and his colleagues worked with ABJHI toward its vision of world-leading bone and joint health care for Albertans. Together with ABJHI, they developed the "shared care" approach tested in the Alberta pilot. Patients entering the system for a hip or knee replacement received all the services they needed, including assessment, diagnosis and treatment, from a multidisciplinary team of health-care professionals in one clinic, with all services coordinated by a case manager. Under the former system, a patient would travel from care provider to care provider, facility to facility - not an easy task for a senior with limited mobility.

Interim results indicate that wait times dropped dramatically. The wait from referral to first appointment was reduced from 35 to 6 weeks, while the wait from that first appointment until surgery was reduced from 47 to 4.7 weeks. The length of hospital stay after surgery also declined, from 6.2 days to 4.3. Patient and care provider satisfaction both increased.

Wait times for hip or knee replacement surgery should not exceed six months, according to additional CIHR-supported research that helped provincial ministers of health in setting benchmarks for wait times in key priority areas. The studies also emphasized the importance of establishing management strategies, such as that developed by ABJHI, alongside benchmarks, to deal with wait times.

"Research into health-care delivery is a very relevant contribution to the discussions around wait times. Projects such as Alberta's experiment with the coordinated approach are important for determining the most appropriate method of care delivery for joint patients. While questions remain around cost per case, patient selection and quality of outcome, these and other research projects are demonstrating the importance of structured research in health care delivery.

Bone and Joint Decade Canada is helping to coordinate the results of such research being done in many centres across Canada with the expectation that sharing the results on a national level will enhance patient care in all jurisdictions." says James P. Waddell, Coordinator, Canadian National Action Network, Bone and Joint Decade Canada.

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Workplace Health and Safety

No Time for Injuries

Paul Kean is a Newfoundlander to the core. He was born in the town of Pound Cove, grew to adulthood there and now lives in nearby Lumsden, on the northeast coast of Bonavista Bay. He and his wife, Alva, both work at Beothic Fish Processors Limited, a company whose origins date back to the 1950s, where Paul has been involved in CIHR-funded research to reduce injuries among its workers.

Being involved in his community is a tradition for Paul. He's been a volunteer firefighter, a member of his town council and president of the local minor hockey association. And he's been part of the FFAW union - the Fish, Food and Allied Workers - for the last 15 years, spending three terms on its provincial executive committee. He is currently the president of its local, representing 420 union employees at the Beothic fish plant. For Paul, it's simple: it's all about "doing your bit to make your workplace and your community a better place."

His co-workers at the fish plant are a big part of his community - after all, the plant is the main employer in the area. Year after year, Paul has been seeing his co-workers at the drugstore, buying painkillers. Their work processing Atlantic snow crab - lifting, reaching, bending and moving on production lines, or butchering - was causing arm, wrist and shoulder pain. They were getting soft tissue and repetitive strain injuries, like carpal tunnel syndrome and neck and shoulder sprains. And, as the workers aged (the average age is 48), they were becoming even more susceptible to injuries.

"You're working 10-hour shifts, 14 days without a day off. Imagine the effect on your body, the lifting, the twisting."

But the nature of the work doesn't allow for taking time off to care for your injuries.

"In the fishing industry, you work as hard as you can, as long as you can, and everything else falls by the wayside. It's sad, but that's the way it is in most fishing communities," Paul says.

That means masking the pain with over-the-counter drugs is often the best workers can do.

That wasn't enough for Paul.

"I took it on myself," he says. "I knew more needed to be done, so through research on the computer and an ergonomics course, I learned about soft tissue injuries."

"I'm always trying to learn more, to gain new knowledge," he says. "I just like to research these things."

Research was the first step. Next, he worked with the plant's health and safety committee to encourage the company to consider the workers' physical needs when it installed new machinery. Then, one day, he was called into the office. Some people from Memorial University wanted to talk. They were from SafetyNet, a CIHR-funded team of researchers studying occupational health and safety in marine and coastal work.

The conversation snowballed into a full-fledged research project to improve working conditions and decrease work-related injuries suffered by workers. The company was involved, the union, the health and safety committee, the workers, and a team of researchers, all of whom, Paul says, were critical to the project's success. The recommendations they came up with were often simple and inexpensive. Workstations requiring standing for long periods of time, for instance, had foot stands or rests installed to help alleviate workers' back pain and tired legs.

"It was a really big thing for our workers to have the research team help us create a safer environment. We just don't have the resources to do it. And now, every day, we're benefiting from it. We're more aware of how to do our jobs more effectively and reduce injuries. And the company is benefitting because we're all more productive."

Paul already has his next target in view - shellfish asthma. Airborne pollutants are common in shellfish plants and they cause all sorts of breathing problems. He wants to keep working with the health and safety committee and SafetyNet to address this issue.

"That's something I'd like to continue to play a major role in. I'd like to educate myself more."

"When our workers do well, I feel good."

Preventing Injuries at Work

Working in a fish processing plant is hard on workers' bodies. A multidisciplinary team of researchers from Memorial University and the University of Quebec at Montreal collaborated with workers, managers and the union at Beothic Fish Processors Limited in a CIHR-funded study to reduce the number and severity of work-related musculoskeletal disorders among the workers. This was an innovative study of the health and safety risks faced by workers in a crab-processing plant, but that's not all that makes it unique. It combined a psychosocial survey, biomechanics research, participatory ergonomics interventions and a study of workers' strategies for coping with pain. It also included workers in the plant, their union and the plant's managers not simply as research subjects, but as full partners and active participants.

This research is one of the studies undertaken by SafetyNet, a comprehensive research program examining the occupational health and safety of marine and coastal work. Led by Drs. Barbara Neis and Stephen Bornstein of Memorial University, this multi-university and multi-province team brings together researchers in medicine, nursing, social sciences, natural sciences, engineering and marine sciences and involves partners in the public and private sectors and the coastal communities in which research is taking place. Its core objectives include conducting research that is relevant to the communities taking part in the studies and offering direct and concrete results. Its studies have focussed on fisheries, oil and gas projects and human cold working conditions.

"It has been an enjoyable experience working with the SafetyNet research team. Employees are now aware of issues surrounding repetitive strain injuries in the workplace and are better able to cope with the pain associated with those injuries. As a result of the studies completed by SafetyNet, the Company gained considerable knowledge on ways to prevent soft tissue injuries. Various techniques enable workers to effectively perform their duties without sustaining injuries, making them more productive. Our ability to recognize conditions that expose employees to musculoskeletal disorders has improved and we look forward to addressing issues related to the demands of the workstation." says Roma Howell, Plant Manager, Beothic Fish Processors Limited.

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Chronic Pain

The Future Belongs to People Who Have Dreams

Marcel Beaulieu lives in Alban, south of Sudbury, Ontario. He used to live in Vancouver, where he worked in construction. One day, Marcel was helping pour foundations at a cattle farm. The concrete supply hose suddenly kinked, buckling and knocking down several heavy pens used for holding cattle. Marcel, on his knees at the time, caught the full weight of the pens on his back, crushing several vertebrae. The accident left him paralyzed from the waist down. He has broken both legs in other, subsequent accidents. Being paralyzed does not mean one cannot experience pain. Marcel lived in chronic leg pain for years before he had an operation that has helped him cope with the torment.

Pain has been a constant and unwanted companion for Marcel. It has plagued him day and night, causing insomnia for weeks on end, depression and addiction to painkillers and alcohol. It wasn't until Marcel visited Dr. Ronald Tasker, a doctor at Toronto Western Hospital, that he met someone who could comprehend his pain. The experience left him in tears.

"They took me to see this old guy. He was asking me all these questions about the pain and I started to cry, because he really understood what I was going through," he says.

That was in 2000, nearly 20 years after his original accident. Marcel, desperate for relief, decided to try a treatment that had never been used before for pain.

Deep brain stimulation (DBS), pioneered by Canadian researchers, has been used for years to reduce or eliminate tremors caused by Parkinson's disease. With DBS, electrodes are implanted into the brain and connected to a battery placed in the chest. A current from the electrodes hits the nerves carrying the pain signal, eliminating the sensation of pain.

For Marcel, the effect was immediate. "It was like all of a sudden - boom! I screamed. The doctor ran over to see what was wrong because he thought I was in pain. I yelled at them to do it again - it was the first time I had felt my legs in years," he remembers.

In all, Marcel ended up having two electrodes installed to help control pain in both legs.

In the past few years, he's been back to the hospital a number of times as doctors and researchers came up with improvements to the system. He's also had to return for repairs to the DBS. Then there are the wires and electrodes he's damaged in the course of playing wheelchair tennis and body-building.

Marcel has been an athlete since long before the DBS surgery. After his accident, despite his pain, Marcel started a new life as a wheelchair athlete. He participated in several disabled games and completed marathons. More recently, he has been helping young disabled people in the Sudbury area learn how to play wheelchair tennis.

Marcel recently suffered a car accident, damaging the stimulator. It's been several months since the accident and, while he waits for surgery to repair the stimulator, he's suffering again with pain, long periods of sleeplessness and depression.

"I have a tape recorder that I carry around and use to make plans. I've got all these things I want to do. I stare at a sign I wrote and put on the wall. 'The future belongs to people who have dreams.' I've ended up starting to say that the future belongs to me now."

Pain Relief - A Case of Nerves

Research on stimulation of the brain has been going on for more than 40 years and Canadian researchers have played a key role. The present form of brain stimulation therapy, for example, was developed from pioneering work on pain processing areas in the brain by Drs. Ronald Tasker and Jonathan Dostrovsky at the University of Toronto. Research has demonstrated that stimulating parts of the brain may have an impact on the sensation of pain, either by helping activate pain control systems or by interfering with the transmission of pain-related signals. Research suggests about one-third of patients with a spinal cord injury suffer from chronic pain. "The spinal cord does a lot of sensory processing. When changes take place in the spinal cord, nerves often become more hyperactive, transforming small sensations into painful ones," notes CIHR-funded researcher Dr. Michael Salter.

As an experienced researcher in the field, he also points to major challenges in treating chronic pain, not the least of which is getting your pain taken seriously. "Many people with chronic pain look completely normal and, unless they end up in the right hands, they may not get relief and may be stigmatized," he says. Looking forward, Dr. Salter and other researchers in the field are searching for ways to improve the diagnosis of chronic pain that will help sufferers get the treatment they need. "New therapies are essential, but diagnostic methods are critical too because they will help establish objectively that there is a problem."

Canadian researchers are making a name for themselves in pain research - and generating headlines on the business as well as the health pages.

Dr. Terry Snutch of the University of British Columbia has a new drug in development to treat chronic and neuropathic pain (pain with no apparent physical cause). His company, Neuromed Pharmaceuticals, has signed a record $US475 million deal with Merck Inc. - the largest-ever licensing agreement in Canadian history - to further develop the drug.

Dr. Michael Hayden, also of the University of British Columbia, was part of an international team that has found a genetic mutation that renders at least 17 people worldwide unable to feel pain. He and his team hope to develop new drugs that will mimic the effects of this mutation to help the millions of people worldwide suffering from uncontrolled chronic pain. Xenon Pharmaceuticals, Inc., a company that Dr. Hayden co-founded, will take the lead in developing a potential new drug.


All people profiled in this annual report have agreed to their appearance in it and approved their individual stories.

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