Health stigma is one of the most compelling and complex challenges facing our communities today. It can be something we are consciously aware of, or it can be a blind spot. Some of the communities that are most vulnerable to the harms of health stigma include those living with disability, obesity, diabetes, and mental health issues.

Deakin University’s Institute for Health Transformation recently hosted a full day event for their researchers, focused on tackling stigma in these key health areas. This event represented a critically important conversation and call to action for the Institute that informed how we can work to tackle this complex challenge, together.It was attended by around 80 people which included researchers (PhD students, early to mid-career, senior academic, and clinical researchers) and professional staff.

Health Consumers Centre was represented on the event’s organising committee, which convened a lived experience* panel as one mechanism to ensure consumer voices were elevated. The panel featured four experts by experience who discussed the profound impact of stigma, and the urgent need for more respectful, inclusive practices in health and medical research, as well as in society more broadly.

A note on language: We have used the term ‘lived experience’ for simplicity but acknowledge that the term ‘lived and living experience’ more accurately reflects the experience of many people living with ongoing health conditions and/or holding marginalised identities.

Understanding lived experiences of stigma

Stigma is a pervasive societal issue that affects people in multiple, overlapping, often invisible ways. The panelists highlighted how stigma manifests in different forms and across different communities, each with its unique challenges.

Meaghan Read, Community Engagement Lead at Diabetes Victoria and a person living with type 1 diabetes, spoke about the widespread misinformation surrounding diabetes. “There’s a misconception that diabetes is easy to manage, that it’s just about doing the right thing with diet and exercise to keep our levels in range” she said. “But it’s not that simple”.

Meaghan noted how people are stigmatised for experiencing complications. “We are told ‘If only you better managed your diabetes in your teenage years, those complications could have been avoided’”.

Meaghan also touched on the internalised stigma within the diabetes community. “It took my dad five years to tell my family when he developed type 2 diabetes, despite raising a daughter with type 1 diabetes. The stigma can be isolating, even within our own community.”

James McLure, a research fellow for CHIME (CHange to Improve MEntal Health), peer worker at Barwon Health and someone who has transformed through his experience with schizophrenia, shared his deeply personal journey with mental health stigma. “Coming out of psychosis while in hospital felt like a spiritual death. I was terrified that everyone would think I was a bad person.” James carried internalised stigma, thinking that people would turn their back on him. In fact, the opposite happened. He shared that he has been given opportunities because of his experience such as being featured on ABC’s You Can’t Ask That and becoming a peer worker.

James credited his family for helping him reconnect with life, saying, “they loved me back to health “. He shared a saying that resonates with him and hopes will help others struggling to feel accepted – Those that matter don’t mind, and those that mind don’t matter.

Philip Waters, Manager of Deaf Victoria, highlighted the lack of effort made by healthcare professionals to communicate effectively with deaf and hard of hearing individuals. “My GP appointments are abrupt and rushed. I have never felt any of my GPs have made the effort to listen to me.” Philip recalled, “I nearly fell off my chair when I went to a GP with my wife, who is hearing, for the first time and saw how much discussion and explanation happened.”

“My experience of the health system is one where I am tolerated.” He regularly encounters health professionals sighing, rolling their eyes or exclaiming their annoyance or frustration at having to navigate an appointment in a way that is not as easy for them or when they need to adjust to ensure he is understood and listened to. Philip questioned “Why am I the one that has to change the way I communicate?” when he is asked to lipread instead of sign.

He warned that these attitudes of health practitioners lead to deaf people avoiding getting the care they need.

Andrew Wilson, from the Weight Issues Network, discussed the stigma surrounding obesity, describing how it has impacted him throughout his life. “Food was a coping mechanism from an early age,” Andrew shared, and explained that over the years he had experienced significant challenges with family violence, mental health, death of loved ones and loss of family connection.

“When you go to see a healthcare professional, there’s judgment.” He shared that one GP tried to shock him into losing weight by saying “You’ve got a son; how can you do this to yourself?”. The result? Andrew avoided seeking help for 10 years which saw his co-morbidities worsen drastically.

Andrew reminded us of the sociocultural factors at play that perpetuate stigma for people who are obese “In films, we’re the fat friend, the comic relief. We’re photographed eating burgers with our faces pixelated… The media and society dehumanise people with obesity.”

The road to inclusion

Creating an inclusive society requires more than just recognising that stigma exists; it involves proactive efforts to change perceptions and practices. The panelists offered several insights on how to begin this journey.

Meaghan Read emphasised the role of education in overcoming stigma. “We need to start with education, especially around the language we use. Words can cause pain, and it’s crucial to remove shame and blame from our discussions. No one would choose to live with diabetes, just like no one would choose to live with cancer.”

Philip Waters discussed the importance of training healthcare professionals to see beyond a medical framework. “Any training for healthcare professionals must include the social model of disability. It’s not enough to understand the medical condition—you must understand the person as a whole. People bring their own framework of what it’s like to live in the world, and only seeing them through a medical lens won’t work. Inclusion means looking at the whole person and the barriers they face in broader society.”

James McLure highlighted the significance of values like kindness and empathy being at the heart of health organisations. “Good people create good outcomes for others. People who are experiencing hard things are innately drawn to good people.” He encouraged a strong focus on values-based recruitment processes but urged organisations not to stop there. He encouraged us to embed and actively foster values in action through policies and procedures.

Andrew Wilson called for national campaigns and systemic changes to address obesity stigma. “We’re talking about gender fluidity at schools, can we also talk about the fact that people come in different sized bodies?”

Lived experience engagement is a critical piece of the puzzle in dismantling stigmatising research practices. But Philip Waters warned, “If you seek to involve diverse people, bring us in from the start…don’t try and retrofit inclusion.” Meaghan Reid agreed, “it’s about bringing in our voices in from the start and genuinely considering our perspectives in every aspect of decision-making.”

Reflections from researchers: Commitments to change

Following the panel discussion, IHT members shared their thoughts on how to apply the insights gained. Many were inspired to take actionable steps toward creating more inclusive and meaningful research practices. Below are some of the commitments researchers have pledged to uphold:

1. More inclusive practice

Members acknowledged the importance of considering intersectionality and ensuring that their research reflects the diversity of those it impacts. To this end, they are committed to:

  • Prioritising intersectional experiences in their research
  • Engaging with and learning from a more diverse range of people
  • Embracing diversity and being mindful of the language used to foster inclusivity
  • Ensuring that research teams themselves are diverse and representative of the communities they wish to benefit.

2. Values in action

The panel discussion prompted a reflection on core values. Researchers expressed a renewed commitment to:

  • Approaching their work with integrity, respect, and empathy.
  • Being less judgmental, taking the time to understand behaviours more closely.
  • Acting with kindness and fostering involvement that goes beyond mere consultation, ensuring that communities are truly heard.
  • Avoiding stereotypes and keeping an open mind when engaging with lived experiences.
  • Embracing the challenges that arise as opportunities for growth and learning.

3. Including lived experience in research

The panel highlighted the value of integrating lived experience into research processes in a meaningful way. Members committed to:

  • Incorporating lived experience into research design from the outset.
  • Embedding co-design principles and listening attentively to the communities involved, without making assumptions.
  • Securing appropriate supports, like mentoring and debriefing, for lived experience representatives in their work.
  • Engaging diverse groups of consumers and fostering ongoing partnerships with individuals with lived experience.

These commitments reflect a strong dedication to applying the lived experience panel’s insights in ways that foster more inclusive, respectful, and impactful research.

Tips for hosting a lived experience panel

There’s a risk that lived experience panels can end up being tokenistic at best, or harmful at worst. If not managed well, such panels can inadvertently reinforce stigmatising attitudes, create an “us and them” divide, and damage the trust that panelists place in the organisations involved. However, with thoughtful planning and meaningful practice, these risks can be avoided.

Andrew Wilson’s feedback reassured us that our approach created a positive, inclusive experience for him:

“Thanks for inviting me to be part of the panel and being very accommodating in getting me to and from the event. The day felt well organised and collaborative, and I could see people were passionate about making real change. The vibe in the room was great, which you can’t take for granted. Alison expertly used the different lived experience stories to highlight stigma themes. It was a great selection of guests and presenters.”

— Andrew Wilson, Weight Issues Network

Alison Coughlan, Manager of the Health Consumers Centre, shared some reflections on how to facilitate a lived experience panel:

Building relationships

“It’s about relationships, but not necessarily existing ones,” Alison explains. Whether or not you’ve worked with panelists before, building a connection is essential. “In the pre-work to the panel, trust and warmth are key. It’s not just about giving people a brief or making sure they know how to get to the venue, although those are important. It’s about demonstrating genuine care and trustworthiness.”

Clear and thorough briefing

Alison emphasised the importance of providing panelists with a clear and concise briefing which was developed in partnership with the organising committee for the event. “Do the work to get to a point of clarity about what you’re asking people to do. Provide panelists with a thorough briefing that includes the objectives, the questions, the format, and the actions you hope people to take after the panel as well as the practical information about where it is and how to get there.” She also encourages flexibility: “Be open to the panel members having suggestions to change up parts of the brief. Offer to have a conversation with each of them beforehand to answer questions and hear their ideas.”

Welcoming and inclusive spaces

Ensuring the space feels welcoming is crucial. “We gave panel members my mobile number so they could send a text when they arrived so I could meet and greet them. I introduced them to other people and tried to make them feel comfortable in the space,” Alison shared. Dedicated members of the IHT team also played a role in creating this inclusive atmosphere, checking in with panelists so they felt included and held in mind throughout the day.

Setting the tone

“It’s important to set a tone where the audience is open to hearing what the panelists have to say,” Alison points out. This isn’t about panelists sharing stories just to make people feel bad, but it’s also not about shying away from the tough truths. “We asked the panelists to call it how it is, but we also wanted them to talk about what needs to change and what solutions look like. We were really focused on balancing the conversation and getting to a place of shared ownership of the solutions.”

Commitment to follow through

Alison highlighted the importance of persistence in overcoming challenges: “You have to work as hard as you can to overcome obstacles to participation.” For example, there were significant challenges in securing an Auslan interpreter for Philip Waters, nearly excluding him from the conversation. Amie O’Shea, an Auslan fluent researcher with a well-established working relationship with Philip was thankfully able to step in at the last minute. “The irony of almost not having Philip participate in a discussion about stigma and discrimination was not lost on us. But it was so powerful for him to be heard.”

Reciprocity and feedback

Lastly, Alison emphasised the importance of circling back to panelists. “It’s so important to close the loop and to always follow up with thanks and show people the impact their contributions have had. We sent the panel members a summary of the key messages that the researchers took away from the session and the commitments to action that were made. We also sought their feedback and input into this article.” This not only acknowledges their input but reinforces that their voices are valued and leaves the door open for future collaboration.

Acknowledgements

We would also like to thank two keynote speakers, Amy Morgan, and Chris Groot for sharing findings from their research into mental health stigma at the event. The details of their presentation are as follows:

Keynote: Review of Australian initiatives to reduce stigma towards people with complex mental illness: what exists and what works?

Associate Professor Amy Morgan, Centre for Mental Health and Community Wellbeing, Melbourne School of Population and Global Health, The University of Melbourne

Keynote: The implications of mental illness stigma for health systems

Dr Chris Groot, Senior Lecturer, Melbourne School of Psychological Sciences, The University of Melbourne

If you would like support to meaningfully involve people with lived and living experience of different health experiences in an upcoming event, please reach out to healthconsumers@deakin.edu.au.