iKNOW Health: Helping People Navigate Complex Health Systems by Addressing Health and Digital Health Literacy
Navigation is a challenge in healthcare, and is increasingly becoming so as information, resources, digital tools and even providers grow in numbers and change rapidly (e.g., Turner 2020). Navigation involves being able to find information and services when needed, communicating with healthcare providers to make informed decisions about care needs and using digital health tools in ways that support one’s health. An inability to effectively navigate can have a negative impact on the care people receive and on their experiences with providers, organizations and the healthcare system as a whole (Change Foundation 2008; Rein 2007).
Healthcare organizations and public partners are taking steps to improve navigation. This is evident from work emerging through a joint movement in Alberta, lead by IMAGINE Citizens Collaborating for Health (IMAGINE Citizens) and Alberta’s Strategic Clinical NetworksTM (SCN). In 2016, IMAGINE Citizens, leaders from Alberta’s SCN, the Health Quality Council of Alberta and other patient-partnered organizations started to build ways to help people in Alberta understand how healthcare works.
Phase two of our work focused on citizen navigation, advocacy and rights. Our environmental and literature scan in this phase identified three types of system-led navigation supports:
- Patient Navigators, such as those used by the Alberta Cancer Patient Navigator Program. Navigators (registered nurses) provide support including the explanation of treatment choices and test results, and assist with the physical, practical and emotional challenges that come with a cancer diagnosis.
- Web-based information portals that provide a broad range of health-related information using plain language: www.MyHealth.Alberta.ca is an example. Content has traditionally been in English, although some content is available in different languages. Another example is the Alberta Health Services Emergency Department wait-time page, which can be used to support navigation to emergency departments (Emergency Department Wait Times).
- Phone-based information services that employ nurses and information resources specialists to answer questions about navigation. Examples include HealthLink-811, a Mental Health Help Line, and a Rehabilitation Advice Line. Call center staff have access to 24-hour translation support to accommodate the needs of an increasingly language-diverse population (Statistics Canada 2016).
These navigation supports work very well in specific contexts. However, we have learned that people still struggle – and even death can occur – when promotion of basic information around navigation (e.g. ambulances) is taken for granted [Wong 2019 (Note: The said research was supported by the task force referenced below.)]. Furthermore, it seems that the navigation challenge may be even more pronounced in certain communities such as newcomer and ethno-cultural communities, marginalized communities and rural and remote communities; and during times such as transitions, when managing chronic illness or disability, crises like the current pandemic (e.g., Wong 2019).
We also recognize that limited health and digital health literacy are critical problems across these different communities: low health and digital health literacy affect people’s ability to understand, interpret and use information and tools available to them, including those available to support navigation. In Canada, health literacy is low across all socio-economic groups (Institute of Medicine 2013; Mitic and Rootman 2012: 1–58; Murray et al. 2008). Research suggests that 37% of native-born Canadians have low literacy skills. Up to 60% of new immigrants have low English literacy and apply the health approach and assumptions of their country of origin to the Canadian health system (Picard 2017; Shaw 2006; Wong 2019). Even when people are literate in other areas and are part of English language cultures, understanding health information is not easy (e.g., Mintzberg 2017). Estimates suggest that “literacy problems cost Canada $10 billion a year” (Picard 2017: 138).
With respect to digital health literacy, there is little Canadian data available (e.g., Canadian Medical Association 2019). However, researchers are starting a conversation about the potential of limited digital health literacy to exacerbate health inequalities (Smith and Magnani 2019). In addition, citizen groups are actively engaged in conversations to raise awareness about digital health and digital health literacy. For example, in 2019 in Alberta, IMAGINE Citizens, along with other organizations, hosted Partners in the Power of Information Sharing, a one-day workshop that explored digital health understandings, realities and adoption (IMAGINE Citizens 2019). At this session, people clearly identified a desire and need to learn more about digital health technologies and how they could be used to support them as they accessed and used healthcare supports and services.
The link between health and digital health literacy and people’s ability to navigate healthcare systems clearly needs attention (e.g., Hersh et al. 2015) — an assumption of sufficient literacy is problematic (Kim and Xie 2017). We strongly believe that attention to health and digital health literacy has the potential to narrow the gap between system-provided navigation supports and the public’s ability to navigate, where possible, more independently thus also supporting advocacy and their individual rights.
However, the path towards increasing both types of literacy across diverse communities is not clear and remains a problem that needs to be addressed. Since 2016, our work has focused on co-designing health literacy and digital health literacy innovations for Albertans (Healthcare 101 2020). Our task force includes community and health organizations and we are working under the tagline "Healthcare 101: iKNOW Health', where 'know' refers to Knowledge, Navigation, and OWnership (see https://imaginecitizens.ca/iknow-health/).
Currently, our task force is working with three community partnerships to move iKNOW Health forward:
- one partnership supports newcomers (Sound Mind/Sound Body – with ActionDignity, Alberta International Medical Graduates Association);
- one supports seniors (MedWise – University of Alberta and IMAGINE Citizens);
- and, the third one works in the area of digital health (Citizens for Digital Health, IMAGINE Citizens).
All the information, resources and tools created through this work are aimed at increasing people’s health and digital health literacy and their confidence and preparedness to engage in independent navigation.
We define independent navigation to mean:
Consistent personal, family or citizen-led navigation versus point-in-time hired or volunteer health systems navigation. Independent navigation happens throughout a person’s life and is broader than health systems navigation, which tends to be specific to an in- or out-patient service, clinic, health condition, life stage or disease state.
When someone can independently navigate, they are able to use their own knowledge and skills to find and access information and services, including system-led navigation services, as needed. Even with independent navigation people may use system-led supports but are, more importantly, prepared and able to navigate themselves. Part of our work is exploring where and how addressing health and digital health literacy can support independent navigation, for whom, and with what outcomes for people and health systems.
With this article we hope to draw others into a conversation about building health and digital health literacy to support people’s ability to navigate complex health systems more independently. We know that health systems are moving toward a future where people and patients are leaders of their healthcare journeys and of health improvement efforts. Our work is a focused attempt to support people to become leaders of their own healthcare journeys, in the context of navigation, and we invite others to connect with us to explore this important topic
About the Author(s)
Jo-Louise Huq is a senior project manager for Healthcare 101, iKNOW Health initiative and works for IMAGINE Citizens Collaborating for Health and Alberta Health Services. She can be reached at Jo-Louise.Huq@albertahealthservices.ca or firstname.lastname@example.org.
Troy Stooke is a member of IMAGINE Citizens Collaborating for Health and volunteers her time to co-chair the Healthcare 101 Task Force. She can be reached at Troy@imaginecitizens.ca.
Tracy Wasylak is the chief program officer at Strategic Clinical Networks, Alberta Health Services, and is co-chair of the Healthcare 101 Task Force.
Patty Wickson is an executive director at Innovation, Evidence, Evaluation and Impact, Alberta Health Services, and project lead of Healthcare 101, iKNOW Health initiative.
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