A New Model for Health Care Respects Indigenous Agency - 大象传媒 Magazine Solutions Journalism

In Canada, Inuit and academic health care researchers have teamed up to combat poor cultural awareness in mainstream health care services.

For thousands of years, Inuit have adapted to the changes in their environment, and continue to find .

But life expectancy among populations in (the traditional territory of Inuit in Canada) is an average of 10 years less than that of the .

Cancer is a leading cause of this disparity. Inuit experience the highest mortality rates from lung cancer in the world, and continue to increase disproportionately.

Inuit communities tend to be self-reliant and are renowned for working together for a common goal, which is evident in their . They have also endured a long history of experiences that span generations.

The ways the Canadian health care system interacts with Inuit populations plays an important part in this health disparity. And there is an urgent need for Inuit to be able to access and receive appropriate health care.

In 2015, the Truth and Reconciliation Commission of Canada report made 94 recommendations in the form of Calls to Action. Seven of these Calls to Action specifically relate to health. They explain the importance of engaging community members, leaders, and others who hold important knowledge in the development of health care.

As members of a team of Inuit and academic health care researchers, we have been working with health-system partners to support Inuit in cancer care. We focus on enhancing opportunities for Inuit to participate in decisions about their cancer care through the shared decision-making model, in a research project we call 鈥淣ot Deciding Alone.鈥�

We travel thousands of miles for cancer care

Our collective success in addressing the commission鈥檚 Calls to Action will require health research to focus on addressing the health care inequities experienced by in ways that take action to promote self-determination.

This is important because current health care models do not often support Indigenous values, ways of knowing, and care practices.

in our mainstream health care systems discourages Indigenous people from seeking care and . It that Indigenous people will when seeking care.

There are many documented instances of our health care system鈥檚 failure to provide appropriate health care to Indigenous people, because of and demeaning and dehumanizing societal stereotypes.

These health system failures discourage people from seeking care, and have resulted in death, as in the case of , who died after a 34-hour wait in a Winnipeg in September 2008.

There can also be significant physical barriers to care for Inuit. Critical health services such as oncology specialists and treatments are often in urban centers such as , thousands of kilometers away from remote communities in Inuit Nunangat. This leaves many Inuit negotiating stressful urban environments, dealing with cultural dislocation and navigating complex health systems without the benefit of community support networks.

During our research, an Inuit peer support worker explained what it can be like for those who travel far from their family and community for their care:

鈥淧eople come with no idea of why, and we are having to bridge two worlds for them. Often patients have no idea why health care providers tell them to get on a plane, and then they think they are coming for treatment for three days and then it becomes two weeks. It is a tough situation as often people have no money, no support. People need to be able to explain their situation and how it is for them. People need to know that they are not alone.鈥�

Research shows that these geographical challenges significantly and are often exacerbated by . Together, these factors may make people to other harms unrelated to the for which they seek treatment.

Patients and health care providers work together

Shared decision-making is an important evidence-informed strategy that holds the potential to promote in health decisions.

In this model, work together using evidence-based and arrive at decisions that are based on 鈥攖o select diagnostic tests, treatments, management, and psychosocial support packages.

Shared decision-making is considered a within internationally, and it has been found to benefit people who in health and social systems.

has also been found to promote , and has the potential to foster greater engagement of in decision-making.

The concept of cultural safety was developed to improve the effectiveness and acceptability of . Culturally safe care identifies power imbalances in health-care settings鈥攖o uphold self-determination and in health care settings for Indigenous people.

The aim of a shared decision-making approach is to engage the patient in a respectful and inclusive way, and to build a health-care relationship where patient and provider work together to make the best decision for the patient.

Most importantly, our approach has emphasized ways of partnering that align with the of research partners and community member participants, both to develop tools and create approaches to foster . The term 鈥渟hared decision-making鈥� translates in Inuktitut to 鈥渘ot deciding alone鈥� and so that is the name of our project.

The results are outcomes that Inuit are more likely to identify as useful and relevant and that respect and promote Inuit ways, within mainstream health care systems.

Self-determination through Inuit Qaujimajatuqangit

Our research uses the guiding principles of 鈥� a belief system that seeks to serve the common good through collaborative decision-making鈥攁s the foundation for a to promote .

Inuit Qaujimajatuqangit principles have been passed down from one generation to the next and are firmly grounded in the act of caring for and respecting others.

Important learning takes place within academic and health care systems that involves deepening understandings of what 鈥減atient-oriented care鈥� means. We need to learn how to do research in partnership with those who are the ultimate knowledge users in cancer-care systems鈥攑atients.

In our work, Inuit partners and community members are leading the development of shared decision-making tools and approaches, building on their strengths and resiliency. Our research and health systems are beneficiaries of these partnerships that hold potential to create health care that is welcoming and inclusive for all.

With guidance and support from Inuit and more broadly, from Indigenous partners, we are learning how to take action on the TRC recommendations, and to make respect and kindness integral to best practice in research and health care.

This article was originally published by . It has been edited for 大象传媒 Magazine.