At the heart of the matter – a story about impact

“I have learned in the past few weeks that anything you assume should not be firmly held to until you are able to confirm it,”  Edith Cowan University student.

Dr Lois Balmer, Edith Cowan University
Dr Lois Balmer, Edith Cowan University

Everyday our Consumer and Community Involvement Coordinators work closely with members of the community and research sector to build collaborative partnerships that will ultimately improve health outcomes in the wider community.

“As a CCI Coordinator I have had the great honour of being in a position to listen and reflect on the experiences of truly inspiring people,” says Corinna Musgrave, CCI Coordinator at the CCIProgram. “One particular event is worth special mention.”

Corinna has supported Edith Cowan University for a number of years, including facilitating student forums with Dr Lois Balmer—an award winning teacher who brings a consumer-centred approach to her courses.

This year, Lois held a forum for her Masters of Bioinformatics students with Caz Boyd, one of our wonderful community members. Caz shared her own engaging, funny and sometimes harrowing lived experience of Cystic Fibrosis. Students were then asked to submit a reflection on their learning from the forum.

Lois explained why she chose to involve consumers when working with students, “I had a student with Ehlers Danlos syndrome in my unit who spoke about her condition and I recognised the engagement and attitude change of the audience when the student spoke. Wanting to develop this further, I decided to contact the CCIProgram for support.”

To demonstrate the impact of consumer involvement on the students, Lois shared one of their learning reflections with us:

“When I started this unit, I thought it would be a large amount of reading about how to investigate and analyse information regarding various genomes, looking at biological databases and maybe gaining some practical knowledge about how bioinformatics is used in genomics,” wrote the student.

“I’ll admit that my knowledge of Cystic Fibrosis was limited. I was ignorant of the effects, not knowing how deeply it created problems for people, and thinking, ‘Well, they have lung problems, that’s all’.

“I think perhaps the most interesting portion of the unit was listening to the advocate, Caz. I did get a little emotional when thinking of the people who have to go through what she has had to.

“Thus, my learnings from this module will have an ongoing effect on me. While I was learning about Cystic Fibrosis, I was also inadvertently learning not to make assumptions too readily.

“While some things on the surface are logical and easy to understand, other things require more thought, more information and more thoughtfulness to develop a full, well-rounded understanding. The learning of the content was not enough alone, the independent reading was not enough alone, they needed to be accompanied by the information from the advocate. Her life, her experience showed that CF is a more serious condition than I knew. I look forward to using these reflections in future.”

Caz was moved by the reflections from the students, “This is the reason I share my life story. Unfortunately with other talks I have done I don’t get any feedback and I often wonder if sharing my story really makes any difference; however, reading the responses I know for sure it certainly does.”

For Lois, the impact is significant, “Teaching can move people to experience something unexpected.”  She is delighted when students say “The way I interact with someone with a disability has changed forever.”

This is what we do at the CCIProgram—we bring together researchers and consumers. We wouldn’t be here without our incredible consumers, we couldn’t do the work we do. People who share expertise with researchers have such an important place in informing, and collaborating, with researchers in order to make inroads into health. We are your voice in health research—we thank you for the honour.