Holly Etchegary is a Clinical Research Scientist with Eastern Health, and a leader in Genetic Ethical Legal & Social Issues for the interdisciplinary team in human genetics at Memorial University’s Faculty of Medicine. With a focus on public engagement, Holly is involved in a wide range projects province-wide, including the Community Health Outreach Office in Grand Falls-Windsor.
According to Dr. Etchegary, when it comes to health related research, sustained relationships and public engagement have the potential to lead to better results. “If we engage families in our research from the beginning, we have a much better chance of following them through the process,” she explains. “We can identify them, help them, and provide support.”
It was this realization that led to the development of the Community Health Outreach Office in Grand Falls – Windsor, a hub for research on human genetics disorders and population health. Opened in 2010, the office is the first development in a plan to develop a network of community outreach offices in each of the province’s four health regions, a project supported by funding from ACOA.
Soon after its inception, the office launched the Colorectal Cancer (CRC) Screening Program for families at increased risk of CRC in the Central Health Region. Colorectal cancer is the most hereditable of the common cancers and is the one that can be prevented by screening, as colonoscopy removes polyps before they become cancerous. Consequently, it is important to identify families at higher than population risk of colorectal cancer. The familial colorectal cancer clinic involves contacting all patients who present with colorectal cancer in the region, collecting a family history of cancer to identify families whose members are at high risk. From this, they are able to provide advice on the optimal colonoscopy screening program relatives should undertake.
While each regional office will have distinct projects, the fundamental purpose is the same for all: to translate key genetic research findings back to the community, their healthcare providers, and, ultimately, to improve the delivery of care in remote areas of the province.
To identify the specific needs for the Grand Falls-Windsor office, Dr. Etchegary and her research team went straight to the community, holding consultations with families from St. John’s to Grand Falls-Windsor. After sending personal invitations to rotary clubs and community groups, Dr. Etchegary and geneticist Dr. Jane Green led seven group sessions in the fall of 2010, where attendees were encouraged to ask questions, learn and relate to one another about their experiences with genetic testing. “People really appreciated the opportunity to sit in a room with someone who’s doing this work and ask questions freely,” she says.
The primary centre for genetics research testing is the Health Sciences Centre, home of the Division of BioMedical Sciences at Memorial University. Before the Grand Falls clinic opened, residents of surrounding communities had to travel to St. John's for screening appointments, a time consuming and potentially stressful trip. By extending this service closer to home, Dr. Etchegary says the outreach office has undoubtedly served a practical benefit to the people of Grand Falls Windsor. “We’ve got a place where families can go, have counselling and testing, but also be followed up with so they never slip through the cracks,” she says.
In addition to more accessible care, Dr. Etchegary suspects that the office provides a long-lasting, psychological benefit for families. “I would hope it makes people feel like they’re being looked after,” she says. “It lessens some of the stress that comes with dealing with an inherited condition, just knowing that you have someone in your community you can call.”
Sharing the results and experiences at the office are also an integral part of Dr. Etchegary’s work. “We do transparent research,” Dr. Etchegary adds. “It’s part of our responsibility as researchers to be accountable, not only to our funders, but to the people who allow us to do the research.” Two papers about the community consultations are still under review, but Dr. Etchegary also plans to send summary reports to patients who participated. She says she continuously strives to feed findings back to people, establishing a stronger, more sustainable relationship.
“I think it fosters trust,” Dr. Etchegary says. “This is so important when talking to families with inherited conditions, and I hope that sense of trust will foster continued participation in the research.”
Ultimately, she believes that connecting to community opinion helps form a base for community-supported, evidence-based public policy. “That's the important thing to remember about public engagement research,” she says. “You must strive to create a service or a policy that is informed in a real way by the people who will eventually use it. That’s what we hope to do.”