A mother’s love — the story of Bousy Al Ibrahim and her six children (Transcript)Click CC for subtitles.

What is a navigator program?

Navigator programs help people manage their experience with an organization. How does someone learn what services are available? How does someone access those services and get the most out of them?

There are many navigation programs worldwide to address health disparities among patients. These programs have expanded across the cancer-care continuum (from screening, to diagnosis, to treatment and palliative care) and been replicated in many other health areas (e.g., complex care, HIV, diabetes).

Patient navigators are key members of a multidisciplinary care team within an organization. They may connect disparate areas in a health-care system. Depending on what services they provide, individual training and background may vary. Some may have clinical licences, like nurses and social workers. Others may be non-clinical professionals (lay navigators). Regardless, they will be important contacts for community partners and other stakeholders.

Navigation programs vary depending on the type of organization, the number of navigators employed, the part of the continuum of care that the navigator focuses on, the type of the disease, and the characteristics of the patients the navigator supports.

Outside of health care, formal navigator programs are not common.

A brief history of health-care navigator programs

In 1989, the American Cancer Society hosted National Hearings on Cancer in the Poor. Among the findings was that cancer education programs were culturally insensitive and irrelevant to many poor people. Inspired by these findings, America’s first patient navigation program was established by Dr. Harold P. Freeman in Harlem, New York.

Prior to the first patient navigator program, the five-year survival rate of patients of low economic status was 30 per cent. One study showed that after establishing the New York City patient navigator program, five-year survivability increased to 70 per cent. Patient navigation assisted with timely diagnosis and treatment, a significant factor in this remarkable improvement in survivability.

Starting in New York and expanding to health-care organizations across North America, patient navigation programs have become increasingly important. When health-care agencies remove barriers imposed by language, culture or wealth, patients enjoy superior health benefits.

In 2001, Nova Scotia was the first Canadian jurisdiction to introduce a cancer navigation program. The 2005 Cancer Patient Navigation: Evaluation Findings noted: “The program has significantly benefited cancer patients and their families in dealing with the emotional turmoil, informational needs and logistical challenges associated with having cancer. It has resulted in more efficient use of clinical time for physicians and more appropriate use of community health professionals. The program has contributed to overall improvements in the cancer-care system itself by addressing problems related to integration, coordination and continuity of care. There is strong evidence to support the implementation of Patient Navigation…”

Patient navigation programs have expanded across Canada, in cancer treatment and beyond. Recent programs have targeted cultural needs. There are now patient navigator programs serving Chinese and South Asian Canadians as well as First Nations people.

Intuitively, we expect that non-health-care agencies will see similar results. Users, paired with a navigator, will receive better service and there will be a corresponding increase in benefits and decrease in costs to both the organization and the individual.

Refugees worldwide

The 1951 United Nations Convention relating to the Status of Refugees defines a refugee as “a person who, owing to a well-founded fear of being persecuted on the grounds of race, religion, nationality, membership of a social group or political opinion, is unable to return to their country of origin.”

In 2015, more than 15 million people worldwide were refugees. Our planet is presently mired in the largest humanitarian crisis since the Second World War. More than half of the Syrian population has been forcibly displaced — eight million displaced internally and five million displaced outside the country. There are almost three million Syrian refugees in Turkey, over one million in Lebanon and almost 700,000 in Jordan.

Photo of Syrian refugee family that utilized CHEO services

“The hardest thing on a mother is to see fear in her child’s eyes and not be able to do anything about it.” Bousy Al Ibrahim with her children, Mohamad, Ehtidal, Aya, Reem, Amal and Rahma

Syrian refugees to Canada

Canada has a long history of resettling refugees and immigrants, often during international migrant crises. There was an existing process of resettlement to take refugees from difficult places around the world and bring them to Canada.

Canada resettled 37,000 Hungarians escaping soviet rule in 1956, 7,000 South Asians expelled from Uganda in 1972 and over 60,000 Vietnamese from 1978 to 1980. Canada maintains a system of private and public refugee resettlement that allows people to come together to do something helpful and hopeful for those fleeing persecution and fear.

In November 2015, Canada committed to the resettlement of 25,000 Syrian refugees. The first families started arriving almost immediately from camps in Turkey, Jordan and Lebanon. The resettlement of these families became a national project with many Canadians privately sponsoring these Syrian refugees. By July 2017, over 40,000 Syrians had arrived in Canada.

Find more resources about newcomer programs

The CHEO Experience - the first Syrians arrive

Children’s Hospital of Eastern Ontario (CHEO) is a pediatric teaching hospital located in Ottawa, Canada’s national capital. It is accustomed to having many newcomers benefit from its care and services. When the Government of Canada announced it would be receiving 25,000 Syrian Refugees, CHEO began preparing by being involved in an Ottawa based planning committee called "Refugee 613."

External view of the Children's Hospital of Eastern Ontario in Ottawa, Ontario

Children's Hospital of Eastern Ontario, Ottawa

The primary focus was to support existing community based resources by informing them of pediatric health issues they may see, how to address them and avoid hospital based care unnecessarily. CHEO’s experience to date was that though refugees can be of poor health, they can be managed within the hospital’s usual functioning.

On January 6, 2016 it became apparent that this would not be the case for these refugees. On that afternoon, six refugee families arrived at the Children’s Hospital of Eastern Ontario (CHEO) Emergency Department (ED) — the first wave of Syrians to be resettled in Canada. Having arrived just days earlier, these six families had an initial medical assessment done by a nurse-practitioner at the Ottawa Newcomer Clinic, Somerset West Community Health Centre. She noted that these families included children who needed more care than CCIO could provide. She arranged for a settlement worker to bring them to CHEO’s door.

The settlement worker who shepherded these families to CHEO spoke Arabic. There was no advance warning of their arrival so it was only by chance that Suelana Taha was working as a clerk in the ED that day. Born in Ottawa to Lebanese-Canadian parents, Taha is trilingual — English, French and Arabic. Guided by her cultural and linguistic knowledge, she worked with the Emergency team to tailor their care and problem-solve their unique needs.

Additional interpretation was arranged, after four hours Taha went out to get food she knew that these newcomer kids would like. She spent her own money to bring in cheese and meat pies common in Syria. The kind that Taha’s Lebanese family eats, not tourtiere like one might expect in the National Capital Region. “The look on the kids’ faces, on moms and dads’ faces, was worth it,” Taha recalls. “Delivering food that was from their culture relaxed everybody. It showed these families that we really wanted to help.”

When this first long night finally came to an end it was time for CHEO to consider what needed to be put in place. With over 1,100 Syrian refuges to be resettled in Ottawa in the coming months, it was apparent that many children with complex care requirements would be arriving soon.

After that first busy six-family day in the CHEO Emergency Department, word began to spread among both Syrian refugees and settlement workers — CHEO was ready to help. Demand for services exploded.

Photo of Gerardo Quintanar

Gerardo Quintanar, CHEO’s Manager of Cultural and Spiritual Support Services

A lot of the initial ad hoc navigator duties fell to Gerardo Quintanar, CHEO’s Manager of Cultural and Spiritual Support Services. Early in 2016, Quintanar visited Maison Sophia Reception House. Run by Ottawa’s Catholic Centre for Immigrants (CCI), Sophia House is a temporary, by referral only, residential facility for government assisted refugees and refugee claimants. Among the refugees he saw were children who clearly had severe health issues and would ultimately find their way to CHEO.

“We were not prepared for this many people with zero English,” Quintanar says. Starting on the morning of January 7, 2016 (the day after the first six Syrian children were admitted), he began accumulating a list of CHEO staff who could speak Arabic — over 25 staff and physicians including business system analysts, patient service clerks, dental technicians and surgeons. CHEO maintains a list of independent translators of over 40 languages that can be called in when needed, including the five most common in Ottawa (Arabic, Chinese, Somali, Spanish and Vietnamese). The exploding demand for Arabic, though, overwhelmed these existing arrangements and CHEO needed as many Arabic interpreters on hand as possible.

Some of the children presenting at CHEO needed to be assessed by as many as seven services. The refugees and settlement workers needed help, not only with language, but also with how to navigate the complexities of a children’s hospital. Quintanar found himself arranging refugee transport to and from hotels and even assisting refugees with basic living skills like how to use Ottawa transit and where to buy groceries. He also found himself assisting CHEO staff and physicians understanding of Syrian culture.

Navigator programs work, but should your organization have one?  Find Out