Written by Candice Taguibao, WHRI’s Digital Health Research Manager
Our health system is continuing full steam ahead toward digital transformation, but who is being left behind?
As researchers and care-providers develop and implement digital solutions to address the health needs of women and other marginalized genders, two recent viewpoint pieces published in the Journal of Medical Internet Research provide principles and tangible action plans to promote equity of digital health technology access and adoption, across underserved groups and ethnic communities.
What is Communication Inequality?
In Designing Effective eHealth Interventions for Underserved Groups: Five Lessons from a Decade of eHealth Intervention Design and Deployment, Lee et al. describe the structural influence model of communication to explain inequalities of digital health uptake across factors such as socio-economic position, race, and ethnicity. According to this theoretical framework, digital health disparities are influenced by differences in whether and how specific sub-populations access, use, and understand information from digital tools and platforms. Currently, digital technologies are often designed to benefit the wealthy and educated, which further widen already existing health gaps.
Principles for Equitable Digital Health Interventions for Researchers, Clinical Leaders, and Government
The good news? Digital technologies and interventions can be modified to address inequities. Through a decade of experience in developing digital health technologies for underserved populations and community-based organizations, the authors summarized five principles for developing equitable digital health interventions.
- Principle One: Start with a strategic roadmap to address communication inequalities. Before development or implementation of digital health technologies, investigators can map out the potential barriers and the larger context. The components of a strategic roadmap should include: (1) development of strategies for sampling relevant and diverse potential users, (2) a comprehensive list of factors or conditions which can lead to communication inequalities, (3) proposed solutions for each identified barriers, and (4) allocation of budgets and resources to prioritize addressing gaps.
- Principle Two: Engage with stakeholders for sustainability. Partner with community stakeholders and use participatory-based approaches to ensure research and development is informed, perceived as trustworthy, effective, and sustainable.
- Principle Three: Design for Usability. To improve likelihood of adoption, especially among those with lower health and digital literacy skills, researchers should design products to optimize readability and navigation and conduct user-testing to evaluate usability among underserved groups.
- Principle 4: Prioritize privacy safeguards and communicate user rights with participants. Consider developing tools which give patients and families agency and visibility over data collected and help users understand the rights they have over their data.
- Principle 5: Support open science while protecting privacy of marginalized groups. While access to data can accelerate learning and innovation, ensure sufficient privacy for participants – present aggregated data, consider trade-offs to protect anonymity versus collecting unneeded granular user data, and keep and analyze study data in secure servers and databases.
Putting it into Practice: Reimagining Virtual Care for Older Ethnic Adults in Canada
Canada’s population is aging and growing more ethnically diverse. At least 70% of Canadian adults aged 65 or older have at least one common chronic condition and aging adults who are from ethnic minority communities are the fastest growing demographic group in the country. According to authors of The Future of Virtual Care for Older Ethnic Adults Beyond the COVID-19 Pandemic, in a post-pandemic world, ensuring digital tools are accessible, appropriate, and acceptable for ethnically diverse populations is necessary.
The challenge and context:
- Virtual solutions are mainly designed for the English-proficient and digitally literate populations, which can exclude older ethnic adults from fully benefitting from virtual care.
- In many ethnic cultures, adult children – mostly daughters or daughters-in-law – are caretakers of aging family members, and are often highly educated and digitally literate.
- Use simple language for patient interface platforms, increase access to interpreters, collaborate with community stakeholders, and assess feasibility and appropriateness of digital intervention.
- Engage with caregivers in design and service delivery of virtual care. For example, create proxy accounts for caregivers.
- Research possible gender-based barriers to inform design of digital solutions, to reduce the burden on women and other caregivers.
- Co-design technology and user test with older adults from diverse ethnic groups and their caregivers.
What Does this All Mean?
The pandemic has paved the way for virtual health care and increased consumer appetite for digital health technology, trends which will likely persist after COVID-19. While there is high potential to improve quality and efficiency of care through digital tools, intentional effort to ensure equitable access and uptake is needed. As the patient population in Canada becomes increasingly diverse, having context-relevant strategies – which consider gender-based, ethnocultural, and other inequities – to inform design and delivery of digital health technologies can support patient-centred objectives in women’s health research and innovation.
To learn more about what WHRI is doing in digital health, click here.
Read: Designing Effective eHealth Interventions for Underserved Groups: Five Lessons From a Decade of eHealth Intervention Design and Deployment and The Future of Virtual Care for Older Ethnic Adults Beyond the COVID-19 Pandemic