Studies show that people often do not have opportunities to engage in health-related decision-making with their health-care providers.
For people experiencing health issues and entering the health system as patients, an arrival at a hospital or a local clinic can be daunting. The health-care setting can be uncomfortable and unfamiliar. People may encounter challenges with communicating in a less familiar language or be faced with technical medical terms and jargon. There may be many health-care providers and their roles may not be clear to someone who comes into the health-care setting.
From the health-care providers’ perspective, new patients arrive every day, each with unique symptoms or conditions and personal circumstances. The support of patients as individuals is further complicated by underlying and systemic structural issues in health systems that can foster exclusion and oppression, including everyday racism. The outcomes can lead to medical mistrust and ultimately, poor care and health outcomes for patients.
People need support and opportunities to work with trusted health-care providers to make the best health decisions for themselves and their families. And those working within health systems need guidance and procedures to fully deliver on their key aspiration: the provision of person-centred care.
Person-centred care and shared decision-making
Person-centred care means treating people who face health issues as valued partners in health systems. The provision of care that is person-centred is much more than just treating symptoms or disease. People bring their own needs, values and perspectives that are vital to manage and improve their health.
Person-centred care upholds autonomy and has important benefits such as enhancing quality of care and patient and provider well-being, and may increase safety in health systems.
Health systems should be structured to support processes that are person-centred and ensure people have opportunities to acquire knowledge, skills and confidence to participate in their health care.
Person-centred care is not a given and can be a challenge to achieve without support for patients and health-care providers alike. Shared decision-making is one way forward to provide this support.
Shared decision-making is an evidence-based strategy that upholds person-centred care. It is a process that engages people with health-care providers to make decisions tailored to an individual patient’s needs, and based on the best available evidence, clinical expertise and patient-informed preferences.
Strategies to support shared decision-making have been shown to be safe and effective for general populations, and to offer even greater potential benefits to those who experience disadvantage in health systems.
Partnerships put people in the centre of health research
We are members of a team of service providers and academic researchers focused on person-centred care in health systems. Members of our team are part of the Inuit (Indigenous Peoples of circumpolar regions) or Indigenous community, and/or are of European heritage and work closely with the Inuit community. Together, we bring knowledge and experience with research, health systems and Indigenous cultures.
The delivery of person-centred care is a challenge. For example, health-care models often reflect values, knowledge systems, research and care practices that do not meet the needs of Indigenous people and communities. Research can contribute knowledge that can lead to societal change and opportunities for everyone to achieve optimal health and wellness.
Furthermore, research that is done in partnership fosters democratic processes of knowledge co-production. To attain health systems that support person centred-care, we need research that is done in ways that support the priorities and participation of the people the research is meant to benefit; in other words, research that is person-centred. We need to ensure that the people who use, or who are impacted by the research, can define the research and its outcomes as beneficial.
We have learned that while Inuit want to have their say in their health decisions, health systems and settings are not structured to support opportunities for their participation.
For example, Inuit who have a cancer diagnosis must navigate complex health systems and often face difficult decisions without support in unfamiliar and sometimes unwelcoming settings, far from home. Many factors adversely affect their participation in health decisions, including: the need to travel long distances for treatment; being separated from family and friends; and language and cultural barriers. Strategies to support shared decision-making are one way to mitigate these issues.
