A word with... Brigitte Sigl

"When consumers, researchers and clinicians collaborate with respect and trust - that’s where the magic lives."

A word with... Brigitte Sigl

"When consumers, researchers and clinicians collaborate with respect and trust - that’s where the magic lives."

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Brigitte is an energetic and deeply committed health consumer representative, driven by a belief that better health systems are built when people are genuinely listened to.

When I meet with her via video meeting on a Tuesday morning, we find out that we’re both German migrants to Australia.

 As a mum of three and someone living with multiple sclerosis, Brigitte brings both lived experience and extensive system knowledge to every table she sits at. She is an advocate for coming together without preconceived ideas and creating together.

 

Interviewee: Brigitte Sigl (health consumer representative)

Interviewer and editor: Julia Brockhausen (HCNSW staff)

Brigitte Sigl with her dog

What first drew you into consumer representation?

I didn’t plan to be here; it kind of found me. Years ago, one of my children was in the hospital, and I saw a call-out for consumer representatives in a magazine. I thought, “Why not?” I was curious, a bit frustrated by gaps I’d seen in care, and I wanted to make sense of systems that felt impersonal at times.

From those first steps with local projects, I got involved in committee work within my Local Health District. That grew into chairing a consumer committee, then into state-wide consumer partnerships.

Living with MS (multiple sclerosis) means I can’t do a traditional nine-to-five job, but consumer work lets me bring my experience, be intellectually engaged and contribute meaningfully to better health outcomes. I’m very passionate about what I’m doing and trying to advocate; it provides me with a purpose. For lack of a better word, it is nurturing for my soul. Because most of us health consumer representatives are very positive and are there for the right reasons.

How did you become involved in the research space?

Like most things in my consumer journey, I fell into it. Someone from NSW Regional Health Partners presented at my Local Health District and put out an expression of interest for consumer involvement. I thought it sounded interesting and decided to give it a go. I ended up chairing the Consumer Advisory Committee for two years, and that’s where I really learned how research works and how important consumers are within it.

I am passionate about the difference between being a research participant and being a consumer partner, and why those roles shouldn’t be mixed.

From there, I was invited to help run workshops for researchers and academics about how to involve consumers in research meaningfully. Teaching others really pushed me to keep learning and deepened my understanding of how consumer voices can strengthen research design and create real-world impact.

Brigitte running all dressed in run in a fun run for MS.

You recently had quite different experiences with two research conferences. Can you tell us what happened?

Yes, it really illustrated how inconsistent consumer inclusion can be in research spaces.

I recently applied to attend two research conferences.

At the first conference, we answered an appeal for abstracts about co-design.  Our team of consumers and researchers submitted one: research that was genuinely done with consumers, not about them. The conference organisers accepted the abstract, and we were all very excited. But when I asked about assistance to attend, because as an unpaid consumer representative I can’t cover flights, accommodation and registration myself, the response was very disappointing.

There was a lot of back and forth. In the end, the answer was basically no support. They offered me a slightly discounted registration fee, but that still left flights and accommodation completely out of reach. It left me feeling like consumers weren’t really wanted, like we were an inconvenience rather than a value-add.

And at the second conference?

The second conference had support options clearly outlined from the start. They offered subsidised travel, negotiated cheaper accommodation, reduced registration for consumer delegates, and built in time and space for consumers to connect at the conference. It was clear they’d thought about removing barriers before I asked.

I walked into that space feeling genuinely welcomed and valued. It made me wonder why we still see such variability in how consumer involvement is treated.

Brigitte speaking at a conference about Patient Experience on a panel.

How did those experiences make you feel, personally and in your role as consumer representative?

With the first conference, I felt undervalued. There was this sense of “we’ll let you present, but we’re not really set up to include you.” It was frustrating because I knew the work we were presenting was rich and relevant, and yet the practical support just wasn’t there.

With the other conference, I felt respected. It wasn’t tokenistic. It was inclusive. And that matters. When you feel genuinely included, you show up differently. You participate more, you connect more, you add more.

What do you think researchers and conference organisers need to understand about this?

If you’re going to ask someone to contribute, especially someone giving their time and expertise without pay, you need to think practically about inclusion. That means being upfront about what support is available: travel, accommodation, registration, accessibility, and even childcare. If support isn’t possible, say that clearly from the start so consumer representatives can make informed decisions.

It’s about respect.

How does better support for consumer delegates benefit research?

In so many ways. Consumer voices improve research relevance, strengthen grant applications, and help ensure findings translate into real-world impact. When consumer delegates are supported, they contribute richly. They ask questions others might not see, they highlight lived realities, and they bring purpose to the conversation.

There’s a misconception that consumer involvement is “nice to have.” It’s not. It’s essential for research that actually makes a difference to people’s lives.

What practical barriers do consumer reps still face in research spaces?

Costs are a big one — travel, accommodation, registration. But there are others: caring responsibilities, disability access, timing of events, and even the language used at conferences. When we talk about inclusion, we have to think about all of those things.

Brigitte and a friend at an Octoberfest party in traditional German clothes with a beer in hand.

Looking ahead, what do you hope for in the future of consumer involvement?

I want to see research spaces where diversity of lived experience is genuinely reflected and supported. Where consumer inclusion isn’t an afterthought, but part of planning from day one. I want us all, the public, researchers and clinicians, to show up not in roles or titles, but as humans, working together to make health systems better.

What keeps you going in this work?

Knowing that when we’re heard, when we’re truly included, real change happens. That’s what gets me out of bed. When consumers, researchers and clinicians collaborate with respect and trust – that’s where the magic lives.

Thank you so much for sharing your story and insights, Brigitte!

Thank you, Julia. It’s been a pleasure speaking with you. And I hope this conversation encourages more people to get involved and advocate for change. Together, we can make a real difference.