CITF-funded findings on the importance of community engagement in research

Social and economic inequities, and related unequal access to health resources, increase risk of SARS-CoV-2 infection and severe COVID-19 outcomes. Developing relationships that connect researchers with community and local health leaders fosters trust. Partnering with communities is key to furthering COVID-19 research and improving vaccine confidence. Here, we summarize results from research collaborations with Indigenous communities, Black Canadians, and isolated or vulnerable groups from the four presentations given during the breakout session, “The importance of community engagement in research,” at the CITF Scientific Meeting in Vancouver, March 8-10, 2023.

1. Presenter and CITF PI Mrs. Lynnette Lucas and CITF PI Dr. Jeff Reading: Reciprocal Relationship Building—Challenges and lessons learned from a COVID-19 vaccine study project in Nuu-chah-nulth First Nations

• The study team initiated a process of research and community engagement co-creation that included:
  • Knowledge transfer – analysis, translation, and validation through a two-eyed seeing approach;
  • Initiation – initiation of a research partnership;
  • Implementation – talking circles, data and blood sample collections;
  • Relationship building – listen and learn, reconcile, and reciprocate;
  • Co-creation – co-designing research activities and data governance;
  • Request for decision – ways to move forward towards co-creation.
• They developed a cultural safety protocol to ensure that blood is treated in accordance with Nuu-Chah-nulth requirements. Blood is regarded as the most sacred part of Nuu-Chah-nulth Peoples bodies, integrity, and culture. The protocol requires a biospecimen guardian, a cultural protocol with individual nations, a cultural ceremony, and spiritual accompaniment.
• Data sharing was done within the FNIGC (First Nations Information Governance Centre) and OCAP (Ownership, Control, Access, and Possession) protocols:
  • Ownership – Data services and research agreements affirming First Nations’ sovereignty over the research data and intellectual property;
  • Control – First Nations’ control over all aspects of research and information management processes, including the right to withdraw consent and have data extracted and returned;
  • Access only for NTC (Nuu-chah-nulth Tribal Council) authorized staff through agreement, with First Nations contextualizing the results and determining how the research findings are used;
  • Possession – returning blood results to Nations and participants, as requested.
• The study team ensured it was considered a reciprocal relationship:
  • They developed collaborative protocols between NTC, SFU (Simon Fraser University) and NML (National Microbiology Laboratory), as well as collaborative research agreements with member Nations. This included seven Nations that were a part of the co-creation phase and five Nations that expressed desire for or formally committed to the collaborative research agreements.
  • They planned data collection in five urban centers for their citizens away from home. By March 2023, the study team had already conducted three pilot data collections and blood samples had been sent to NML for testing.

2. Presenter Ms. Chantal Phillips and CITF PI Dr. Upton Allen: COVID-19 research within Black communities: Utility of a Community Advisory Group

Racialized communities, including Black community members, were disproportionately affected by COVID-19. Historical and current systemic anti-Black racism also results in the underrepresentation of Black communities in clinical research, making studies such as the seroMark study even more valuable and unique. The seroMark study established a Community Advisory Group (CAG) as a solution to help overcome barriers to representation of Black communities in clinical research.

1. Important to respect the “6 E’s” of Community Advisory Groups:

• Engagement with potential members by word of mouth through networks to connect with Black and non-Black academics focused on equity, Black leaders, and underrepresented individals, such as Black youth.
• Establishment of a confirmed list of diverse/intersectional members.
• Effectiveness: increase regular meeting attendance with consistent diverse representation and increase Black community research participation.
• Empowerment: modify protocols and shift project direction through the CAG’s impact. This includes regularly updating CAG on research, incorporating CAG suggestions where possible, and capacity-building.
• Equity: developing a plan to decrease barriers to participation and to directly benefit the community involved.
• Evaluation: discuss awareness of strengths and weaknesses in an iterative way that allows for revision.

2. The impact of a Community Advisory Group on research:

• Enhanced engagement of Black communities.
• An increase in the proportion of Black participants.
• Opportunities to discuss issues unrelated to COVID-19.
• Thorough evaluation of the impact of CAG on teams.

3. Presenter and CITF PI Dr. Peter Nugus and CITF PI Dr. Fernanda Claudio: Trust and community in infectious disease survival: A syndemic approach to COVID-19 immunity and illness amongst Orthodox Jews in Montreal

This research team conducted a syndemic approach in various Orthodox Jewish Communities in Montreal, examining the interacting socio-political and biological factors that have cumulative disease effects on marginalized communities. They used blood samples, community surveys, key informant and community member interviews, and participant observation for their research.

• First sampling round (June 2021): high community infection rates, with 51% having antibodies to COVID-19, compared to about 10% of the general population.
• Women expressed greater satisfaction with Quebec health services (68%) than men (54%) and higher trust in governments (66%) than men (42%).
• Cultural and religious identity was the main factor distinguishing “insiders” from “outsiders,” and who was trusted and who was not, regarding information on the pandemic and COVID-19 vaccines.

4. Presenter and CITF PI Dr. Jack Jedwab and CITF PI Dr. Simona Bignami: Social determinants of health and COVID-19: preliminary evidence from the RISC-Montréal project

In an online survey of 2449 households, 1773 respondents volunteered to participate in serological testing and 1451 dried blood samples were received from August 2021 to November 2022.

• Younger cohorts (18-24) and respondents from larger households showed higher SARS-CoV-2 antibody seroprevalence.
• Non-white respondents and immigrants showed markedly higher seroprevalence.
• Respondents working remotely showed lower seroprevalence.
• Healthcare workers showed lower seroprevalence than people in other occupations. Racialized healthcare workers showed much higher seroprevalence than White healthcare workers.