The FNHA develops new pathway for community-driven data and research requests



​​The First Nations Health Authority (FNHA) has developed a new pathway to better respond to data and research requests, supporting informed decision-making and planning for First Nations communities. The Research and Knowledge Exchange team reviews requests from organizations and communities, prioritizing research that has the potential to transform the health and wellness of First Nations in BC.

“Communities can expect timely access to data," says Meriam Yacoub, former Manager, Research and Knowledge Exchange, of the new online forms and process. “We encourage organizations to partner up with communities so that the work is community driven and aligns with our Multi-Year Health Plan."

For the RKE team, research is a journey of ongoing learning through observation, experience, and interpretation. An essential part of research is knowledge exchange, a concept that ensures knowledge is gathered, used, and shared ethically, centred in Two-Eyed Seeing; the First Nations perspectives on health and wellness and the Western perspectives that have settled on local First Nations' territories.

“The overarching goal of Two-Eyed Seeing is that each person involved conducts themselves with the humility to understand that there are a variety of perspectives that might enhance the work in transforming First Nations peoples' health in BC," says Yacoub, who led the data access work.  

Communities and organizations are invited to explore the new pathway to partnering with the FNHA on data and research projects such as the Quw'utsun Preterm Birth Study featured below, guided by a Quw'utsun grandmother and Elder channeling her grief into positive change for future generations.  

​Bringing healthy birth back to Quw'utsun

In 2018, staff from Ts'ewulhtun Health Centre at Cowichan Tribes on Vancouver Island noticed a high number of preterm births in the community. Preterm birth (or premature birth) is an early birth that can lead to health challenges. Preterm birth can be difficult for families when infants need highly specialized care far from home.

For Sul-hween (Elder) Doreen Peter, this issue is personal. The retired Community Health Representative lost four grandchildren to complications from being born too early. During her 34 years in health care, Doreen also supported other families following the loss of infants from preterm births.

“It was just a heartbreaking experience to be able to try and support them, knowing that there's not much you can say or not much you can do, but be there with them through their loss," recalls Doreen.

Ts'ewulhtun staff approached the FNHA and Island Health for medical record data that would support the community's goal to “Bring healthy birth back to Quw'utsun." The data was not readily available which led Cowichan Tribes to launch the Quw'utsun (Cowichan) Preterm Birth Study in partnership with both organizations. 


To launch the study in a good way and respect Quw'utsun standards for research ethics, the project team hosted an on-territory Ethics Ceremony in collaboration with the FNHA, Island Health, and Research Ethics BC. Sul-hween (Elders) Lydia Seymour and Doreen Peter guide the study to make sure Quw'utsun snuw'uy'ulh (teachings) are followed.

“I couldn't be more pleased with how we've all worked together to support this project," says Doreen. “I feel like through working with the First Nations Health Authority, it has a rippling effect and brings into light some of the similar things that are happening in other communities such as this one."

Quw'utsun mothers, Elders, and fathers shared their heartfelt birth experiences and teachings with the study team. In 2020, medical records from the BC Perinatal Data Registry and the First Nations Client File confirmed that preterm birth rates in the Cowichan Valley Region were more than three times higher among First Nations compared to non-First Nations from 2011 to 2018.

While this data produced a first of its kind report essential to providing hope to First Nations mothers facing hardship from preterm births, Quw'utsun community and leadership seek more data. For example, data up to 2023 would include pregnancy and birth experiences during the COVID-19 pandemic. More detailed data could point to possible ways to prevent preterm birth.

“How come our moms are losing their babies too soon?" Doreen continues to wonder. “Through this project maybe we'll get some answers and avoid all the heartbreak that's in our community from such losses that they've suffered. I believe this is vital as children are our future."

Explore the new pathway for community-driven data and research requests at the FNHA.
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