Case story

Training Community Workers to Deliver Local Informed Consent Materials

Ross Andrews is an epidemiologist, Associate Professor and Associate Director Research and Education at Menzies School of Health Research. He is a project leader for the East Arnhem Healthy Skin project. Ross explains the process of developing and using informed consent materials for a drug trial in the community of Galiwin’ku in Arnhem Land.

We initially had a long period of discussions and meetings with the Yalu Nurturing Centre at Galiwinku. We went through what we would normally describe as a plain language statement that had all the information we wanted to provide to people [about the proposed trial]. Yalu then worked with us and with ARDS, the Aboriginal Resource Development Service, to rewrite that research story in consultation with the Aboriginal women’s groups and so forth. They used their own story about cycad nuts, which is a traditional story about a process, and rewrote the story on a flip chart. There’s a Yolngu Matha version and an English version and the pictures are the same, just the words are different.

The Healthy Skin Program Community Workers are participating in a training program for a Certificate II in Child Health Research. Out of that they learn about research methods and consent processes. So we had a group of Community Workers come together and provided some training for them to use the resource.

To work out how many people we needed to train, we worked out some logistics. There are 2,500 people the Community Workers needed to see. We looked at the total number of houses and how long we thought it would take to go around talking to people in every house in the community. In the end we trained 15 Community Workers.

It’s taking three to four weeks going around the community. One men’s group of community workers and one women’s group have been going house to house, explaining to people what the study is about, when it will start and what will be involved with individual participants. The original plan was that a team of male and female community workers would go to the same house. Men would speak to men, and women to women, and then move on to the next house.  What’s tended to happen is that the men are a little bit quicker [with the process].

One of the great things with [having] a flip chart which has been developed by the community is the workers have been going around houses telling everybody about that.  [When] they’ve come back, we’ve said ‘So how do you think that went? Do you want any changes?’ We were thinking that maybe they’d say it was too long and might want to pull some things out, but it was actually a little bit the other way. People were saying they’d really like a bit more information. We’ve had a lot of discussion.

Once that component is done then we’ll do the same cycle again. When Community Workers first tell people the story it’s critical to then walk away. Because when we come back again with the Workers, explaining again the process of the story and asking individuals for their consent to participate in a study, people understand that they can say ‘no’. That’s a very important message we want to give. People can say ‘no’ in one of two ways.  They can say ‘no’, or they can just avoid us. Avoiding is seen to be an easier way and something that is culturally acceptable for people. That is, “I know what you are going to ask because you’ve come around already and you’ve told me what you are going to ask. So I’ll just walk away”.

When the actual work commences, the only people who will be involved in the tests are those for whom we have written informed consent.