Practicing inclusive research with vulnerable communities.

Imagine designing a product or service without considering the needs and perspectives of a significant portion of your target audience. That’s precisely what happens when vulnerable communities are excluded from the research process. Their voices, often marginalised and overlooked, hold invaluable insights that can shape inclusive and accessible solutions. By actively involving vulnerable people in research, we not only uphold ethical principles but also unlock a wealth of knowledge that can drive innovation and create positive social impact.

One in six Australians lives with a disability, and more than 125,000 Australians are homeless, yet the needs of vulnerable people are often overlooked in product and service design due to a lack of inclusive research practices. Inclusive research practices are a way to make positive use of our privilege as creators of solutions but they’re also a way to create positive impact and drive innovation for people who are often forgotten.

We’ve done a lot of research with vulnerable communities. 

We’ve done research with people whose lives were affected by natural disasters including floods and bushfires. In both cases we worked hard to ensure that we spoke to people from all walks of life with the widest range of life experiences possible. Everyone is affected by large-scale weather events, not just able-bodied middle-class people, so it’s really important to understand how people with different needs can be supported by system-wide changes. Our research in those cases helped inform how many different systems and services could be more accessible and inclusive.

We’ve also included people who are neurodiverse, people with disabilities, First Nations people and people who are culturally and linguistically diverse in co-design, which included co-research. We were looking at the experience of the Queensland driving test, which we knew was challenging for many people. In this case the outcomes of that co-design process were 32 recommendations to Queensland Transport and Main Roads to begin to improve the practical driving test experience for everyone.

It’s ethical to do research with vulnerable communities.

Even though we have those examples and more, it’s still a common misconception that it’s unethical to do research involving vulnerable groups like minorities, those with disabilities, low-income communities or people who are experiencing homelessness. This misconception seems to arise because there are specific ethical issues when including vulnerable people in research and co-design that it’s simply too hard to manage those issues.

Our perspective is that as people who create things it’s more ethical to include vulnerable people as they are the most likely to be adversely affected by the outcomes of unconsidered design. As such, it’s important to understand the perspectives and needs of people who are vulnerable.

It is, however, important to take extra care to ensure research with vulnerable people is conducted ethically. Researchers hold a position of authority, so they have a heightened responsibility to prioritise the wellbeing of participants.

Ethical research with vulnerable populations involves several key elements:

1. Appropriate and informed consent: This means clearly explaining the study in terms that are appropriate for your participants or co-designers, emphasising participation is fully voluntary, and ensuring participants understand their rights.
2. Minimising risks while maximising benefits: As the researcher you must carefully consider potential risks and put safeguards in place to protect privacy and autonomy. Where possible you need to make sure the research provides meaningful benefits. Sometimes the benefits or outcomes are uncertain, and that also needs to be made clear.
3. Building trust, collaboration and respect: As the researcher it’s essential that you demonstrate genuine respect for participants’ cultures, backgrounds and circumstances. The ideal perspective is one of mutual learning. It’s especially important to avoid any sort of coercion of participation, for example by providing special services to people who take part in research. However, it’s also important to appropriately compensate people for taking part in research as participants or co-designers. Finding that balance can be challenging which is why it’s ideal to involve people from the vulnerable group or groups you’re interested in when planning and conducting the research.
4. Sharing benefits, outcomes and advocacy: After doing research, it’s important to provide the findings to the community in a way that improves their well-being. Sometimes, as the privileged researcher, you might be able to use your position and the research outcomes to help the group or community with their advocacy efforts.

There’s no one-size-fits-all for ethical research with vulnerable groups. It requires carefully considering the specific context and participants. But by prioritising care, respect and doing no harm, researchers can navigate the complexities ethically and fill important knowledge gaps.

There are real benefits to your organisation.

If your organisation serves people who are vulnerable doing research with them is very valuable. Providing services or products that miss the mark and don’t properly meet their needs is a waste of time and money and could be creating more harm for people who are already at risk.

Think of it this way: if you were creating something new for the executives at your organisation, you would definitely talk to them first to understand what they truly need and want. A bank wouldn’t launch a new account or service for their wealthiest clients without getting their input and expectations. In both cases, you’d investigate their needs to reduce the risk of creating something that misses the mark.

It’s no different when your customers or users include vulnerable populations. No matter who you’re serving, putting out something that falls short of what people actually need is a major risk. Doing ethical research with vulnerable groups helps prevent this by ensuring you have a real understanding of their unique situations, challenges and requirements. A little upfront research pays off by avoiding a costly misfire down the road.