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// November 14, 2014

There’s no doubt about it – patient engagement is hot. It’s the focus of conferences, reports, websites, and entire organizations. But how do we maximize its potential? Patient representative Colleen McGavin and MSFHR Vice-President, Research & Impact, Bev Holmes spoke at Northern Health Research Days earlier this month on how research can support increased patient engagement.

Patient engagement is happening all over in BC – in our health authorities and non-profit organizations, as well as through the ImpactBC-led Patient Voices Network and other programs funded by the Ministry of Health’s Patients as Partners initiative.

But even those most involved agree there’s a lot to learn.

Fortunately, there is increasing convergence on some important issues related to patient engagement. There seems to be wide support for the notion of “patient” as broader than someone experiencing illness at any given moment; family members as caregivers and the public as health system users are included in the definition.

Similarly, “engagement” is seen as broad – and active. It happens at an individual level, with people engaged in their own care, and at the organization and system levels, with people engaged in developing and improving services, programs, policies and funding decisions.

Finally, we seem to agree that not all engagement is equal. Consultation (giving input); involvement (rolling up your sleeves); and shared leadership (an equal say in decisions) are all valid but very different forms of engagement.

As well as this convergence, there’s a growing evidence base on what works in patient engagement, and an emerging sense of what we don’t yet know. Drawing on the literature – and specifically three recent examples of patient engagement research (lead authors Ross Baker, Antoine Boivin and Kathy Kovacs Burns) – we offer a few more thoughts on both these areas.

What do we know?

Engaging the right people for the right reasons is crucial. What is the goal of the engagement, who should be at the table, and what knowledge and experience are participants expected to contribute?

Patient engagement needs resources: time, money, infrastructure, skills. If we’re serious about patient engagement, we have to invest in it and support all participants – including health professionals and leaders – to play their part.   

There are some good models for patient engagement – BC is a leader through Patients as Partners – so we probably don’t need to develop more. Similarly, we know a lot about the barriers, and can now focus on overcoming them.

We’re starting to understand the benefits, albeit mostly through isolated case studies.  As far as evaluation, indicators of success are emerging (see for example the Canadian Foundation for Healthcare Improvement’s measurement framework).

And of course there’s the small matter of a culture shift. People agree with patient engagement in principle, but it will need changes in attitudes, beliefs, knowledge and behaviour, as well as infrastructure support, to be successful. 

What do we need to know?

We need a better understanding of the connection between patient engagement and outcomes. What are the mechanisms by which engagement translates into better decisions, services or care?  How do we set realistic goals for patient engagement?

How best can we recruit and support people? Statistical representativeness is important, but with smaller initiatives, people need to be able to speak on behalf of others. Once recruited and involved, how should we reward patients for service?

Researchers and practitioners emphasize the need to study how patient engagement unfolds in ‘real time.’ We have good theoretical models on the one hand, and good practical patient engagement on the other, but theory and practice could be better linked.

We’re learning about patient engagement at a project and organizational level, but what about the broader social context? What are some of the attitudes and beliefs – as well as system level structures and policies – that may influence success?

Opportunity knocks?

BC has an opportunity to develop a patient engagement research agenda – a concerted, collective effort to answer questions of importance to all of us – as part of two provincial initiatives. First, through Directions for Health Research, the provincial health research strategy facilitated by MSFHR, which includes a number of actions on the theme of patient engagement.  And second, through BC’s SUPPORT Unit, part of the Canadian Institutes of Health Research Strategy for Patient Oriented Research (SPOR).

Further reading:

// November 7, 2014
An illustration from E. Paul Zehr's new book, "Project Superhero" (illustration by Kris Pearn)

Our guest blogger this week is 2003 MSFHR Scholar E. Paul Zehr. As a professor of neuroscience at the University of Victoria, Zehr uses topics related to pop culture (such as Batman and Iron Man) to engage the public and communicate complex scientific concepts about the human body.

More blog posts: Spark >> A BC Health Research Blog

As someone who is passionate about translating scientific knowledge for a wider audience, I use superheroes as tools to explain scientific concepts.

In my pop-sci writing, mainly for Scientific American and Psychology Today magazines, and in my earlier books Becoming Batman and Inventing Iron Man, I was trying to reach a general public audience anywhere from 18 to 80+ years of age (see my earlier Spark blog post).  

Since publishing Becoming Batman in 2008, I’ve been invited to speak in schools across Canada. I’ve spoken with thousands of kids covering the entire K-12 range, but mostly clustered around middle school grades 6 to 8. During those talks, I paid very careful attention to the kinds of questions I was asked and who was asking them.

It turns out that a lot of the questions were coming from girls. Many wanted to know if I’d ever write something specifically for “them”. Them, in this context, meant girls aged 10-15, a group who often begin to drift away from science and mathematics. In response, I wrote my latest book called Project Superhero.

Published in fall 2014, Project Superhero is a “hybrid” fiction/non-fiction book written in diary style and specifically aimed at tween girls. Facts about human physiology, exercise training, and nutrition are combined with the fictional story of my protagonist Jessie and her friends during her grade 8 year.

In Project Superhero, Jessie is working on a year-long school assignment where each student chooses a superhero to explore. She chooses Batgirl and finds many of the compelling issues found in Batman. That is, the concept of hard work and extremely dedicated training taking human ability to the maximum — regardless of gender. She goes beyond just the theoretical understanding of Batgirl’s physical capacity and begins to learn about martial arts and good nutrition. She realizes she’s not really going to become an actual superhero, but discovers that her potential greatly exceeds any limitations she ever imagined constraining her.

Jessie learns about the wondrous science of the human body but in a subtle way. More importantly, though, what began as a book trying to frame science in more engaging way morphed into a book with lots of themes about female empowerment. Jessie finds that many of the limitations society places on us are false limits that can — by diligent effort — be overcome.

The roadmap for a healthy future needs explicit efforts aimed at encouraging young girls to maintain and explore fully their early interests in science. This group in particular needs the reinforced message that, as 13-year-old Jessie concludes in Project Superhero, “there really is a superhero in me.”

// October 30, 2014

As we head into November, men everywhere are bracing themselves (and their upper lips) for another season of “Movember”. 

An annual campaign that began in Australia in 2003, Movember is a movement to raise awareness of men’s health issues. Men are encouraged to raise funds from their family and friends by growing moustaches during the month. All proceeds raised by the Movember Foundation benefit men’s health research programs, including prostate cancer, testicular cancer and men’s mental health.

As lead investigator of the Men’s Health Research Program at the University of British Columbia and an Australian himself, it seems fitting that Dr. John Oliffe is a huge supporter of Movember. Since receiving a scholar award from MSFHR in 2006, he has made great strides in his efforts to improve the mental health of men living with depression.

The funding Oliffe has received from MSFHR has enabled him (and his co-PI John Ogrodniczuk, a UBC professor in Psychiatry) to attract funding from Movember to establish the Men’s Depression and Suicide Network, comprising of five projects dedicated to reducing men’s depression and male suicide. Oliffe contends that depression is often overlooked by clinicians in men’s health. “There are many stigmas that exist against men and depression,” Oliffe says. His network intends to raise awareness and remove some of those stigmas.

Oliffe states that his award from MSFHR has tremendously impacted the scope and quality of his research.

“Without the award from the Michael Smith Foundation, I would not have had the ability to focus on this research in the last eight years,” says Oliffe.

Within the same year, he also received a New Investigator award from CIHR. Oliffe says that both awards enabled him to stay in Canada and research in British Columbia and helped him leverage further funds; last year, wherein the network received $3 million in funding from the Movember Foundation.

Oliffe is encouraging men to help raise awareness for men’s mental health issues by participating in Movember. When asked if he is planning on sporting a moustache this November, Oliffe simply says he will try. His preferred moustache style? A visible one.  

To read more about Dr. Oliffe’s MSFHR-funded research: www.msfhr.org/john-oliffe or visit www.menshealthresearch.ubc.ca

// October 27, 2014

Breast cancer researcher Dr. Samuel Aparicio has been named the winner of the fifth annual Aubrey J. Tingle Prize.

Created in honour of MSFHR’s founding president & CEO, this award is given to a British Columbia researcher whose work in health research is internationally recognized and has significant impact on advancing clinical or health services and policy research.

“Dr. Aparicio is an internationally recognized breast cancer and genomics scholar who has led landmark studies that have revolutionized the field of molecular oncology,” says Dr. Diane Finegood, MSFHR president & CEO. “His research projects, including the world’s largest global study of breast cancer tissue, have had far-reaching impacts on diagnosing and treating breast cancer.”

Dr. Aparicio’s research program encompasses the fields of cancer genomics, mouse genetic models, high-throughput screens, and translational breast cancer research.

His most recent work on the molecular taxonomy of breast cancer led to identification of new genes that could change the way breast cancer is diagnosed, and form the basis of next-generation treatments. This discovery was preceded by another breakthrough in decoding the genetic makeup of the most-deadly form of breast cancer, known as triple-negative subtype.

Dr. Aparicio is also interested in tumour heterogeneity, and is involved in developing genomically and clonally characterised xenograft models of breast cancer. He collaborates widely with other groups, with current projects including the genomic and biochemical analysis of lymphoma, ovarian cancer, and several rare pediatric cancers.

His contributions to academic research have been widely published in scientific and clinical journals such as Nature, Science, Cell and the New England Journal of Medicine. He is the recipient of numerous awards from academic as well as industrial institutions.

He is the Nan & Lorraine Robertson Chair in Breast Cancer Research and a Canada Research Chair in Molecular Oncology at the University of British Columbia and the BC Cancer Agency in Vancouver, Canada. He is also Head of the BCCA’s Department of Breast and Molecular Oncology, and a Professor in the Department of Pathology and Laboratory Medicine at UBC.

Dr. Aparicio will receive the $10,000 award at an MSFHR event to be scheduled in the coming weeks.

// October 23, 2014

The Michael Smith Foundation for Health Research (MSFHR) is pleased to announce that a funding competition for trainee awards is scheduled to launch Friday, November 28.

Trainee awards are one of the cornerstones of MSFHR’s investment in building British Columbia’s capacity for world-class research. These awards provide up to three years of salary support to help highly qualified post-doctoral fellows develop their skills. By supporting the training of young investigators, BC is well positioned to retain them as future health research leaders.  Since 2001, MSFHR has more than 1,200 trainee awards worth nearly $39 million.

The 2015 trainee award is open to applicants who are eligible to hold a post-doctoral fellow position at a BC-based host institution for the duration of the Research Trainee – Post-Doctoral Fellowship Award. Host institutions must have a signed memorandum of understanding with MSFHR.

Competition guidelines will be posted to MSFHR's website on November 28. Applicants will be able to access the MSFHR ApplyNet system in early 2015. Applicants are required to have an MSFHR ApplyNet account to manage all aspects of their submission. Application deadlines will be communicated as soon as they are confirmed.

A formal announcement of the competition’s launch will be circulated on November 28. To ensure you receive this notification, subscribe to MSFHR’s mailing list.

As in previous years, MSFHR is working with partner organizations to jointly fund some awards. Confirmed partners will have their keywords included in MSFHR ApplyNet and applicants will be able to indicate if they are interested in being considered for a partnered award.  MSFHR will continue to seek out additional partners throughout the competition cycle so check our website regularly for an updated list of confirmed partners and keywords.

For more information on this funding competition, contact Rashmita Salvi at 604.714.2779 or rsalvi@msfhr.org.

// October 16, 2014

By pointing the way to better diagnosis and treatment – and hopefully an eventual cure – research is vitally important to improving the lives of the more than 40,000 British Columbians living with schizophrenia.

“The only way schizophrenia is going to be ‘beat’ – if you will – in the long term is through more understanding, ranging from basic chemistry up to helping people cope in their day-to-day life,” says Gerhart Pahl, chair of the BC Schizophrenia Society Foundation*.

“We believe heavily in research, and for those of us who have the illness in our family, we are looking to research to someday beat this disease.”

Funding research is one of four areas of focus for the society and its foundation – along with education, advocacy, and support for families. This investment in research, which makes important contributions to the understanding, diagnosis, and treatment of schizophrenia, is supported in part through a strategic partnership with MSFHR.

Since 2013, the two organizations have jointly funded three BC researchers whose work is helping to reveal the underlying mechanisms of schizophrenia and enhance the treatment of this devastating illness. The shared goal is ultimately to mitigate schizophrenia’s human and economic toll.

University of Victoria neuroscientist Dr. Leigh Anne Swayne, a 2014 MSFHR Scholar, is the latest beneficiary of this partnership.

Swayne’s research is focused on two main areas. The first is the role that complex proteins called ion channels play in brain development, injury, and repair. The second is how these same ion channels transmit the electrical signals that underlie the beating of the heart and how mutations in the proteins in the ion channel can lead to certain heart conditions.

“Increasing our understanding of the roles of ion channels in the developing brain might give us further insights into neuro-developmental diseases such as schizophrenia and autism,” Swayne says.

“I’m very excited about this award, most importantly the positive impact it will have on my research program.”

“We essentially double what we can do”

For the BC Schizophrenia Society and its supporting foundation, the partnership helps stretch donor contributions even further through the availability of matching funds.

“If there was a project that needed a hundred thousand dollars, we would have to come up with a hundred thousand dollars,” says Pahl. “But now, with our relationship, we would perhaps pay fifty thousand dollars, and the Michael Smith Foundation would fund the other fifty.

“We essentially double what we can do, so this is a very enticing and important part for us.”

Pahl also notes that partnering with MSFHR allows the society to support research without having to organize a peer-reviewed competition and coordinate award administration, both of which can be nearly impossible for small organizations with limited resources to conduct effectively.

“We don’t have this expertise and capability, but we still wish to continue funding research. It is important to us,” Pahl says. He adds that the partnership with MSFHR, which provides this expertise, provides assurance that these critical components of the research funding process will be carried out in a thorough and professional manner.

The BC Schizophrenia Society was founded in 1982 by families and friends of people with schizophrenia. Since then, the society has grown into a province-wide family support system with 24 branches and more than 2,800 members.

In addition to supporting research through partnership with MSFHR, the society has also raised the funds to endow the schizophrenia research chair at UBC.

Related links

* Note: The BC Schizophrenia Society Foundation raises funds for schizophrenia-related research and the programs and services offered by the BC Schizophrenia Society.

// October 16, 2014

Blog post by Sherel Loo; video by Chelsea Noel

This summer marked MSFHR’s fifth consecutive year of supporting Shad Valley’s annual enrichment program, designed for students in grades 10, 11, and 12 with an interest in science, technology, engineering, math and entrepreneurship.

Students who are accepted into the program spend four weeks living on campus at one of 12 leading Canadian universities. During that time, they participate in workshops and lectures that are academically stimulating, as well as team-building exercises and recreational activities to ensure a balanced experience. In short, it’s a fantastic combination of hard work and play.

Not just anyone can participate in the program. A typical student demonstrates high academic achievement, exceptional drive, initiative, creativity, and entrepreneurial flair.

For the second time, I had the pleasure of attending UBC’s open house in July. The open house is held on the last day of the Shad program and includes a project showcase, luncheon, and variety show. Students were tasked with designing a new product or service in line with this year’s theme: "Living Large with a Small Footprint".

Shad students were asked to consider how changing values and dwindling resources are changing what "the good life" looks like. Their creative projects were showcased on this day to their peers, visiting parents and friends, and supporters of Shad.

While most students return home to enjoy the rest of summer, a select few get the additional opportunity to complete an internship. This year, my colleagues Rashmita Salvi and Michelle Ng paired Amy Han and Robyn Lee with two MSFHR Scholars.

Upon getting to know Robyn and Amy, I quickly saw the value of these internships. Both students were exposed to new experiences outside classroom walls, and it was clear they were intrigued by health research. A seed has been planted in these bright, young students, and they may eventually pursue a career in science or health research.

Below is a brief summary of their internship experiences.

Amy Han

Amy HanHigh school: West Vancouver Secondary School
Internship supervisor: Dr. Amori Mikami, Department of Psychology, University of British Columbia

Amy was thrilled when she learned about her internship. Having gone through what she considered a transformational experience at Shad Waterloo, she was keen to continue that momentum. Amy always had an interest in the human mind and mental health, so this internship was a good fit. She was also hoping to get exposure on how research is done in a university lab setting.

Amori’s current study involves helping parents of children with Attention-Deficit/Hyperactivity Disorder (ADHD) make friends. Children with ADHD have a particularly challenging time making good, close friendships. Because the interactions between Amori and her participants (parents, kids and teachers) happen during the school year, the summer months are spent processing the data. Amy was therefore instrumental in helping Amori process the data collected from the first cohort of families. This included observing and recording the parents’ behaviours towards their kids, their interactions with each other, what the kids said about themselves, and what their teachers said about them.

Because this is a new study, Amy had an opportunity to provide input on how best to capture and categorize the data. The summarized results then helped illustrate similarities and differences between parents and their kids, giving Amori’s team a better understanding of the data.

This internship exceeded Amy’s expectations. She saw firsthand how much data can be required for a research study, how the data is processed, and what programs and methods are used. She also got the chance to experience everything behind-the-scenes and gained insights into what a health research career could look like — something you don’t get a flavour of in a high school classroom setting.

“I've never seen kids with ADHD firsthand, so it was really eye-opening being able to watch them interact with their parents. I would then code their behaviours, tones, and approaches accordingly. What I found even more interesting was seeing parents teach their kids strategies on how to make friends as well as how to maintain those relationships."

>> Amy Han

Robyn Lee

Robyn LeeHigh school: Burnaby Mountain Secondary School
Internship supervisor: Dr. Jodi Viljoen, Department of Psychology, Simon Fraser University

Lab coats and pipettes. That’s what came to Robyn’s mind when she found out she landed an internship in a health research lab. Little did she know, her time with Jodi would be far from that.

During her stint in Jodi’s lab, Robyn was exposed to many new things. For starters, Jodi introduced her to the clinical tools and measures her team uses in their research to examine mental disorders in adolescents and health-related outcomes such as violence, victimization and self-harm. While these tools typically take Jodi’s undergrads a couple of months to learn, she was impressed with Robyn’s ability to grasp key concepts in one day. As part of the practical component, Robyn used these tools to perform some of the mental health screening inventories — a comprehensive measure of mental health and personality, a violence risk assessment tool for adolescents, and an adolescent treatment guide.

In addition to learning the clinical tools and measures, and developing research questions, Robyn job shadowed Jodi and her grad students, giving her the opportunity to learn more about research methodology, data analysis, and what drew the various team members to health research. Robyn prepared a conference poster based on some of her data analysis and returned to SFU last month to present the results of her project to the team.

“As part of Robyn’s mini research project, I had her develop her own research questions. I was particularly impressed with her ideas because she was able to provide an adolescent lens to our research. I thought this was a good way to expose Robyn to our research and to teach her what research methodology in health sciences is all about.”

>> Jodi Viljoen

// October 15, 2014

A new report examines the implementation of clinical care management (CCM) guidelines as a case study for understanding how to achieve large-scale change within British Columbia’s health system.

Clinical care management is an area of focus in the BC Ministry of Health’s Innovation and Change Agenda. Its goal is to implement a guideline-driven, evidence-informed system that will improve the quality, safety, and consistency of key clinical services and improve patient experiences of care.

To date, 11 clinical care areas have been identified for guideline implementation in BC; however, the approach to implementation varies within each health authority, depending on the local context.

The report outlines factors that help or hinder province-wide implementation of CCM guidelines in different contexts. It is informed by focus group sessions and interviews with CCM implementation experience, including clinicians, administrators, senior executives, and board members from every health authority in the province.

Initial findings of these sessions were validated through an online survey distributed to individuals with CCM implementation experience.

Based on this consultation process, two sets of recommendations were developed. The first provides action-oriented strategies for improving the success of future CCM initiatives. The second outlines a series of six broad guidelines and supporting strategies for managing large-scale transformation within BC’s health system.

The study was conducted by InSource Research Group following a competitive call for applications facilitated by MSFHR. Funding was provided by the BC Patient Safety & Quality Council and administered by MSFHR.

> Download the report (PDF)

// October 9, 2014

More than ever, health researchers are being called upon to improve the quality and cost-effectiveness of health care. In an era of constrained resources and increasingly complex problems, it is important that research efforts be coordinated for maximum impact in addressing the challenges facing our health system.

Over the past two years, a concerted effort has been underway to develop a provincial strategy that will support greater coherence and a common understanding of priorities among BC’s health research community.

A new summary document published this month — Directions for Health Research in BC — represents the culmination of the first stage of this process.

The document provides insight into BC’s health research landscape and sets out a vision, strategic directions, and actions that are vital to establishing a strong, coherent, and effective research enterprise. It aims to create a road map for building on BC’s accomplishments over the past decade while anticipating changes to the evolving health and research landscapes.

The document outlines three strategic directions for health research in BC:

  • develop and enhance key foundations that support the creation and use of knowledge;
  • create a culture of inquiry and innovation across sectors that encourages health research and its use; and
  • make BC a hub for world-class research that makes a difference.

These strategies and their supporting actions will reduce unnecessary duplication of services, encourage collaboration between researchers, patients, health providers, and decision-makers, and enhance BC’s ability to attract investments in health research.

From strategy to action

Progress has been made on several initiatives that will advance actions outlined in the strategy document.

In June, the provincial government announced that it is working on a data resource centre that will pull from the many existing government data sources to serve as an invaluable tool for health researchers. This centre supports one of the document’s main actions, focused on creating a common data platform for BC.

In July, BC’s business case for a provincial support unit under CIHR’s Strategy for Patient-Oriented Research was submitted for approval. Once established, the support unit will be a driver of several of the actions outlined in the provincial health research strategy.

Currently, the BC Ethics Harmonization Initiative is proceeding with plans for a harmonized ethics review model that will support elements of the strategy. Work is also underway within the BC Ministry of Health to develop an academic health sciences network that will bring research closer to patient care.

Creating the road map

The process of developing a provincial health research strategy began in April 2012 with a meeting of BC’s health research and health care leaders. At this meeting, MSFHR was endorsed to consult with the community and facilitate the strategy’s development.

A planning team led by MSFHR undertook extensive environmental scanning, supplemented by a consultation process that included regional workshops, key informant interviews, focus sessions, and an online survey.

Throughout the project, an advisory board of senior health system and health research leaders provided advice and direction to the planning team.

To learn more about the consultation process and the strategy’s evolution, visit www.bchealthresearchstrategy.ca

> Download "Directions for Health Research in BC"

// October 1, 2014

MSFHR and Genome BC are partnering to bring the highly regarded Scientist Knowledge Translation Training (SKTT™) workshop back to Vancouver.

The two-day course, scheduled for November 6 and 7, is open to individuals who have received a 2014 MSFHR Scholar Award or are part of a research project funded by Genome BC. Participants will develop the skills required to create a knowledge translation (KT) plan that can help generate research impact, promote the use of research results, and ensure that research findings reach the appropriate audiences.

The workshop is an important part of MSFHR’s commitment to enhancing the KT skills of its funded researchers.

“This is an exciting opportunity for the Foundation, as it represents the first time we’ve offered knowledge translation training specifically for our Scholar Award recipients,” said Gayle Scarrow, MSFHR’s knowledge translation manager. “Helping our researchers build these skills will increase both the potential impact of their work and KT capacity in the province.”

There is growing recognition that dedicated resources and expertise are needed to increase the use of health research evidence in practice and policy. In response, research funders and the users of research evidence are placing greater emphasis on helping researchers develop the skills and networks required for effective knowledge translation.

The Scientist Knowledge Translation Training (SKTT™) Workshop is led by Drs. Melanie Barwick and Donna Lockett of Toronto’s Hospital for Sick Children. The course was initially developed to help SickKids scientists develop their knowledge translation skills, but is equally suited to other practitioners, educators, and decision-makers in community-based organizations and government. Learn more about the course and its instructors.