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Panel 209 - Grant agencies and participatory science in Canada

Conference Day: 
Day 2 - November 8th 2018
Takeaways and recommendations: 

Granting agencies and participatory science in Canada

Organized by: Fonds de recherche du Québec, Fanny Magini

Speakers: Dr. Marc Fortin, Vice-President, Research and Partnerships, Natural Sciences and Engineering Research Council of Canada (NSERC); Ted Hewitt, President, Social Sciences and Humanities Research Council (SSHRC); Serge Marchand, Directeur scientifique, The Fonds de recherche du Québec – Santé (FRQS); Louise Poissant, Directrice scientifique, Le Fonds de recherche du Québec – Société et culture (FRQSC); Dr. Michael J. Strong, President, Canadian Institutes of Health Research (CIHR)

Moderator: Véronique Morin, Science Journalist

How granting councils are adapting to participatory science

Participatory science has emerged as more than a buzz word in modern research. In a growing number of fields it’s becoming the norm. At the same time, Canada and Quebec’s research granting councils are increasingly interested in strengthening the link between science and society.

But how can granting councils support the participation of non-scientist citizens in research?

At NSERC, there are no specific programs that target participatory or citizen science. Rather, Marc Fortin suggested that the real value comes from the convergence of traditional academic science and citizen and community knowledge.

“Participatory science recognizes that scientific knowledge is broadly distributed knowledge…,” said Marc Fortin, NSERC’s VP, Research and Partnerships. “There is value in connecting distributed knowledge that exists with citizens and in communities with the more traditional western science that resides in universities or other organizations.”

“If we think of Indigenous communities,” he added, “they have knowledge of their territory, of their resources that resides in their communities, in their history. It’s place-based knowledge.”

NSERC is exploring with a northern Indigenous community how their knowledge can contribute to understanding the effects of climate change and other human activities on their natural resources.

“They want to document and analyze the changes, and then influence decision making with that knowledge,” said Fortin.

For such research to be supported, Fortin said it is incumbent upon research funders to consider how they assess grant applications, not only from individual citizens, but from communities, grassroots organizations and other “knowledge holders”.

Some efforts to integrate participatory science are already underway. NSERC is holding a consultation for the redesign of its Research Partnerships Program. Fortin encouraged delegates to visit NSERC’s website in the coming weeks to review the proposed changes and provide input on ways to accommodate a broader range of partners.

Broadening the definition of “research partner”

SSHRC President Ted Hewitt said community engagement has been a priority at his granting council since its inception 40 years ago.

“Engaging with communities and stakeholders is a critical activity for all funding agencies because it places us at the forefront of innovation and because it truly enables excellence in research and talent beyond the confines of academia,” he said, adding, “it also places research at the service of citizens”.

SSHRC allows grants to be held directly by community groups and organizations that “maintain an active research focus and have capacity for doing that work”. It also strives for a diversity of perspectives on peer review panels, including public, private and not-for-profit members.

The council has several programs that accommodate partners outside of academia, including:

As well, SSHRC is leading a $3.8-million initiative by the Canada Research Coordinating Committee to engage Indigenous organizations in developing a strategic research plan that identifies new ways of doing research with Indigenous communities, including strategies to grow their capacity and their ability to partner with the broader research community.

“Part of this will involve exploring ways to make it easier for Indigenous not-for-profit organizations with a research mandate to apply for and maintain eligibility to manage grant funding,” said Hewitt.

How patients are driving research

In the area of health research, a growing number of discoveries are being driven by patients. CIHR’s newly appointed president said in his research area of Amyotrophic Lateral Sclerosis (ALS), it was patients who alerted scientists of the link between dementia and the fatal neurodegenerative disease, triggering a course correction in the research.

“It was the involvement of patients that moved this field forward. Now we have international criteria and therapies that are being looked at for it,” said Dr. Michael Strong.

CIHR’s history of involving patients in research and on peer review committees goes back 18 years. Today, “that engagement, that ability to work with patient populations to make meaningful changes in healthcare is what (CIHR) is all about. It’s in the fibre of what we do.”

Patients, he added, even have a role in more fundamental science where patient needs can help define questions and problems.

Strong noted there will be additional opportunities for patient engagement as part of the redesign of CIHR’s new 10-year strategic plan. “We are already changing our funding mechanisms… We are now moving to have community organization become eligible to do (research) and then hold and be responsible for those grants.”

“Patient-oriented research” is changing how science is being done across Canada. Strategic Patient Oriented Research (SPOR) Networks recognize patients as subject experts who are engaged as full partners on teams that include scientists, policymakers, funders and health care professionals.

One success has been the SPOR Diabetes Action Canada Network’s partnership with the Aboriginal Youth Mentorship Program, a program co-designed by community elders. Under the program, Indigenous adolescents offer children in grades 7 through 12 an after-school health program aimed at reducing risk factors for type 2 diabetes. The initiative resulted in a 12% reduction in diabetes among children in those communities.

Getting academic scientists on board

Dr. Serge Marchand, the Scientific Director at FRQS, acknowledged that participatory research requires academic scientists to work in new ways, with new expectations, but the pay-off is research that responds to real patient needs and focuses on solutions that can make patients’ lives better.

“For scientists that worry, oh I can’t reorient my project because a patient tells us what to do. But you will be surprised … you just have to change your goal a little and then you go to a place where everyone is happy, not just you and a few of your scientist friends,” reassured Marchand.

He encouraged scientists who have positive experiences with participatory research to share their stories with their peers. “Tell your colleagues the value of the process and why it works. Then the scientific community will be open to the idea.”

For example, FRQS has launched the AUDACE program, which supports high-risk projects with the potential for high impact and includes participation from non-academic researchers. In one project,

One project is working on innovation news ways to produce ethical foie gras using biomarkers to identify ducks and geese that are genetically more likely to develop a fatty liver. The idea for the research originated with Fernande Ouelletea, a goose and duck farmer in western Quebec who wanted an ethical alternative to gavage-based foie gras, which uses force feeding to fatten a bird’s liver. Ouelletea is now part of a research team that includes a New York chef and academics from Quebec.1

FRQSC’s Scientific Director, Louise Poissant, said citizens have important roles to play in the research process in defining the research needs, co-designing the problem, co-constructing the approach and methodology, and sometimes serving as a member of the evaluation team.

While FRQSC (the Quebec equivalent to SSHRC) doesn’t have specific programs that see citizens leading the research, they can participate in strategic networks and research team programs. FRQSC also provides funds to enable the participation of non-scientists, including community members, teachers and people who are homeless.

“We also support research infrastructures of institutes and university-affiliated centres in the social sector that work with citizens, often patients,” said Poissant.

Looking ahead, Poissant said FRQSC is updating its programs and processes to make it easier to integrate non-academic experts, including changing assessment indicators, educating evaluation committee members, and extending the duration of some grants to allow for more meaningful engagement.

It’s never too early to engage the public

Marchand said scientists shouldn’t shy away from explaining even fundamental research to patients. Clearly communicate to patients why this research is important and how the various stages in the research process can potentially lead to a new diagnostic or treatment.

“If we don’t explain to the public in a way they can understand, they will think that we’re taking their tax money and having fun in the lab,” said Marchand, “but if you explain the long process, everyone will be happy I’m sure.”

The public doesn’t always need to understand the intricacies of the research, said Hewitt. Often, just sharing your excitement can be infectious. “We need to excite the audience and the people that fund the research so they understand why we are excited about this and why it’s important to us.”

That level of outreach and engagement didn’t happen with genetically modified organisms, cautioned Fortin, who was one of the first researchers to work in what has become a highly contentious field of science.

“In retrospect, the scientific community failed to share our knowledge and we failed to engage them … we lost the trust of a segment of the population because we didn’t reach out and involve them in some of the work.”

To avoid such outcomes in the future, Fortin said research funders have a collective responsibility to evolve the system.

“Granting councils can be catalysts. They can create policies and new programs,” concluded Fortin. “But it requires a collective discussion. We cannot do this in isolation.”

 

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