Digital health research can be positive for Indigenous people. But our study found it needs to follow these principles

Digital technologies are transforming health care for all Australians, and this includes Aboriginal and Torres Strait Islander peoples. Electronic health interventions (eHealth) can involve features such as telehealth, instant messaging and mobile apps that support health care.

But testing what kinds of eHealth work for Indigenous people – and what don’t – relies on good quality research. And so far there hasn’t been strong, overarching guidance on what culturally safe eHealth looks like for Indigenous people.

We reviewed 39 studies about eHealth interventions for Indigenous people. We wanted to identify what made eHealth interventions effective, beneficial and culturally safe for the Aboriginal and Torres Strait Islander communities involved.

Here’s what we found.

Who does eHealth research benefit?

Aboriginal and Torres Strait Islander peoples are the most researched human beings in the world, according to the National Health and Medical Research Council.

But much of this research has not directly benefited them. This has created a sense of scepticism about research among some Indigenous people.

Researchers who want to explore the role of digital innovations in Aboriginal and Torres Strait Islander health care need to consider whether it is beneficial for those Indigenous communities – not just the science community.

Studies have shown positive outcomes for Aboriginal and Torres Strait Islander peoples using eHealth for a range of issues. They include mental health challenges, support for new fathers and upskilling health care staff.

But research has so far focused on evaluating individual studies or specific modes of delivery, such mobile health. The eHealth studies our new research examined involved a range of interventions including telehealth and mobile diagnostic tools.

We aimed to identify what characteristics underpin effective eHealth interventions. We also assessed the “cultural quality” of eHealth research involving Indigenous people. That means how well a study has integrated Indigenous ways of knowing, doing and being.

To do this we used an Aboriginal and Torres Strait Islander framework, established in 2018. It asks 14 questions, including whether the research conducted was a priority of the community, and whether local community-controlled organisations or local Elders were consulted and engaged.

Here are the principles we found that underpin good digital health research for Indigenous people.

Building trust is crucial

Trust helps researchers establish credibility while allowing participants to have confidence in the research.

Trust may depend on a number of factors, including the community’s past experiences of research, whether researchers follow cultural protocols, and their institutions’ track record working with Indigenous people.

Aboriginal Community Controlled Health Organisations – or ACCHOs – play a crucial role creating strong and trust-based partnerships.

Building trust might look like:

• using devices people are already familiar with
• engaging people in eHealth services at an ACCHO or another culturally safe setting
• using eHealth to complement existing health care and workers
• respecting the diversity of individuals and their communities
• acknowledging technology is not always relevant and has its limitations.

Relevance to people and place

What languages do participants speak? What are the local protocols?

Aboriginal and Torres Strait Islander people are not one homogenous group. Place plays a vital role in Indigenous knowledge systems.

We found eHealth research is successful when it responds to the specific needs, customs and cultures of the local community, rather than coming in with a cookie-cutter approach.

Digital health services also need to consider how they engage Indigenous people according to diverse factors such as gender, age and literacy. Information about health should be evidence-based but presented in a way that best engages and informs the target audience, without judgement.

Highlight cultural values

Indigenous people also need to see themselves and their values reflected in the services meant for them.

Visual and audio elements can be particularly effective, when they’re designed by – and represent – Indigenous people. This might mean using authentic Indigenous art and flag colours, as well as characters that reflect the appearance and voices of Aboriginal and Torres Strait Islander people.

We also found interactive features like chat, messaging and game-like elements are more likely to engage First Nations people in a culturally safe way.

Authentic Indigenous leadership in research

Indigenous people should not only be involved in eHealth research, they should be leading it.

We found when studies had two or more Indigenous authors, they rated much more highly for cultural quality. This means they reflected Aboriginal and Torres Strait Islander ways of knowing, doing and being.

The result is ethical and mutually beneficial research: positive outcomes for both the researchers and the community involved.

Our study shows genuine co-design with Aboriginal and Torres Strait Islander communities must be foundational in eHealth research, not an after-thought. Australia’s First Scientists must be engaged at the first hour, not the eleventh hour.