Involve Australia surveys Australians on community involvement in health and medical research

A study on Australians and their views on involvement in health and medical research show that more than 60% of Australians believe research should be informed by community views and would like their voices heard.

It is well understood that involving the community in research that will impact them is an important part of good science, and it helps to make sure that health research has positive and effective outcomes in communities.

Involve Australia, a community-led project coordinated by Australian Genomics, surveyed 1156 members of the Australian public about their views on becoming involved in research about their community’s health.

• More than half of the people said they were living with a health condition
• One third of the people said that they lived with someone who had a health condition
• One third of the people said they had university degrees
• Most of the people had Australian ancestry
• Under one third of the households earned more than $100,000 per year

The results showed that many people did not understand the difference between involvement and participation. Lots of people said they would not get involved with research because they were worried about their private information being shared or scared of the medicines or procedures (for example, needles) they might have to undertake. These reflect activities of participation, not involvement.

A quarter of the people were worried they did not have enough knowledge or education to become involved in research. They were not confident that they could add value to research.

Some people (15%) said they weren’t interested in research, but the ones who said they were interested told us they wanted to help with:

• designing research,
• helping write research papers, and
• updating their communities on research.

They also said they wanted their work to be recognised and would like to be paid for their time, and would be more likely to get involved if it was easier to. For example, they spoke about not travelling long distances, using Zoom and phone, not paying for parking, and making sure the places they had to go were accessible for everyone.

People said they were more likely to get involved if they trusted the researcher or the company doing the research. They were more likely to get involved if the organisation was not a private company trying to make money.

Most of the people said they would get involved in research that helped someone they loved, or people in their community. Many wanted younger people with health issues to have a better life than they had, and that they would get involved with research to make that happen.

This research shows that community members and researchers should speak with each other more often. People said they wanted to know what research was happening and they also wanted to tell researchers what they thought was most important.

Involve Australia suggests that research institutions and universities have good relationships with the people in their communities, and that researchers need time and resources to build these relationships.

See the full article here.