Partnering with the marginalized

 

Enabling lifelong health and wellness

To tackle health-care inequities affecting vulnerable populations, Smita Pakhalé turns to community peer researchers in a grassroots approach to epidemiological research.

Smita Pakhalé

Photo: Valérie Charbonneau

by Karine Fossou

For as long as she can remember, Smita Pakhalé has always been deeply aware of social injustice and has never turned a blind eye to it. “I grew up in India where there are a lot of inequities because of the caste system,” says the professor in the Faculty of Medicine’s School of Epidemiology and Public Health. “I was always inspired by my parents’ focus on action rather than being a spectator of the marginalized.”

Those principles have guided her research efforts over the past decade. A scientist at the Ottawa Hospital Research Institute (OHRI) and a respirologist at The Ottawa Hospital since 2008, Pakhalé also works as a clinical researcher in epidemiology at The Bridge Engagement Centre, an open community and research space in the heart of Ottawa. This is where she maps out innovative clinical research approaches to tackle health-care problems among the city’s most vulnerable populations, “the ones on the margin who often fall through the cracks and stay away from health-care services, where they feel stigmatized and not welcome.”

The Bridge is the cradle of a community-based research model Pakhalé developed in collaboration with Mark Tyndall, an infectious diseases specialist formerly at OHRI. “HIV and hepatitis C are not killing marginalized people, tobacco is killing them!” she recalls telling him. Indeed, between 40% and 60% of patients in this group die from tobacco-related cancers or cardiorespiratory diseases.

Pakhalé’s approach moves research out of the lab to forge meaningful partnerships with people who have experienced homelessness or drug abuse firsthand. They are invited to work as peer researchers alongside academic researchers, acting as a bridge to their community.

Their first project, called PROUD, was a demographic survey that collected data on drug use, food insecurity, sexual trauma, and Indigenous health, housing and legal issues. It revealed that a staggering 96% of marginalized people smoked, compared to 9% to 12% in the general population. The findings led to PROMPT, a smoking cessation research project that showed that providing a nicotine substitute to vulnerable people in a compassionate environment helped them to reduce smoking, as well as other drug use, and led them to make dramatic lifestyle changes.

Pakhalé and her team are now focusing on The Healthy People Initiative, a $2.5-million project funded by the Canadian Institutes of Health Research and based on PROMPT results showing that marginalized populations are not afforded proper opportunities to participate in the economy. “We carried out a six-month pilot project, where we connected them with a job, opportunities to volunteer or to get an education,” she says. “This had an effect on decreasing their tobacco and drug consumption.”

The transformative impact of Pakhalé’s community-based research work has led to the establishment of a second site in Toronto and has garnered attention from countries such as Germany and Australia, which are interested in replicating her research model.

She now hopes that the trust and engagement earned from the community to build research partnerships will contribute to better informing health-care and public policies and to thinking outside the box. “We strive to alert policy makers about the urgency of better addressing the needs of marginalized populations,” says Pakhalé, “especially at a time when they are hit even harder by the pandemic.”

 

Sadia Jama

From left to right: Sadia Jama, Saania Tariq, Nina Huynh, Smita Pakhalé and Ted Bignell of The Bridge Engagement Centre.

Photo supplied

Pillars of inclusive research

Sadia Jama’s academic background in poverty and health inequities naturally drew her to The Bridge Engagement Centre, where the University of Ottawa doctoral candidate in epidemiology works with clinical researcher Smita Pakhalé.

Jama’s research focuses on The Bridge’s Healthy People Initiative, which is assessing how providing marginalized people with employment and volunteering opportunities can drastically help lower their tobacco or other drug use and improve their health and quality of life.

Like all other research projects carried out at The Bridge, it involves community peer researchers who tackle health-care disparities in poor and vulnerable populations, among which Indigenous peoples are disproportionately overrepresented.

“It is a bottom-up approach that brings people with lived experience of poverty and substance use to work side by side with academic researchers through the whole life cycle of a project,” says Jama. “Their role stretches from grant applications and designing research questions, which they often adapt to their context, to data collection and knowledge mobilization.”

Community peer researchers are instrumental in enabling dialogue and trust between marginalized people and academic researchers like Jama, contributing to more inclusive and accurate research. Recent funding granted to Pakhalé for assessing the impact of COVID-19 and the effectiveness of public health messaging on the most vulnerable may point to the recognition such an approach is gaining. “Policy makers are interested in the model we are developing,” says Jama, who like her mentor wishes her research will have a meaningful impact on health-care policy.

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