A word with... Gillian Mason

"I’m restless and impatient and thought I best get more involved rather than upset with waiting for consumer involvement to become business as usual!"

A word with... Gillian Mason

"I’m restless and impatient and thought I best get more involved rather than upset with waiting for consumer involvement to become business as usual!"

Health Consumer Representative

Meet Health Consumers NSW’s newest Board Member, Gillian Mason from The Physical Disability Council NSW. Gillian joined the Board during our AGM on 20 October. Here, she tells us about her journey in health consumer engagement and representation and why she decided now is the time to get into Board representation.

How did you get into health consumer engagement and become a health consumer representative?

I live with a rare genetic condition, several chronic illnesses and ADHD, and so have built up (accidentally!) a huge portfolio of lived experiences of health systems, treatments, surgeries, consumer rep and advocacy initiatives and roles over the last decade. I think it’s fair to call this a portfolio – managing it is often more demanding than my day job!  I’m also a physiotherapist and have worked for almost two decades in healthcare delivery and eight years in research.

Experiencing lots of parts of the health system from both sides of the ‘bedside’ for 20 years, it became obvious to me that the views, incredible systems knowledge and problem-solving skills of patients, carers and communities just weren’t being tapped into when health services were being designed and evaluated.

I could also see that we desperately needed a healthcare workforce that understood more about what it’s like to live with disabilities and chronic illnesses. I wanted to advocate for more inclusive and accessible health workplaces too – we need more sick and disabled people working in healthcare!

To get into consumer engagement and decide to become a consumer rep nonetheless took me a long time! My disabilities and illnesses are mostly invisible. Because I was worried about stigma and discrimination in my job, I spent the first 10 years of my career trying to be very quiet about what I was dealing with.

It has taken lots of learning from, and working with consumer leaders in this space, and leaning into community and peer support. Honestly, it also took becoming senior enough at work that I wasn’t worried about finding more work if I got fired before I started to be more open about my illnesses and disabilities.

I also had to decide that it felt safe to be openly queer working in science. I do think things are changing now. We have loads more work to do, but I hope that disabled, LGBTQI+ and neurodivergent young people will already have a much more equitable path into working in healthcare and research, in environments where they can be their authentic selves! I hope that we can be part of the radical changes needed to ensure health consumer rep spaces are safe and affirming for folks who have been excluded because of structures that have been racist, ableist, homophobic and marginalising in other ways.

I started engaging with and involving consumers in work I was doing on setting up a Stroke Research Register at Hunter Medical Research Institute in 2016, including our own HCNSW Board Chair, John Garbutt. Wrapping a consumer engagement platform around the Register made such a massive impact.

I started speaking about my disabilities and lived experience at work where it was relevant. I got invited to speak at some Red Cross Blood Service events and in the media about my experience being a blood product recipient, got invited to do a keynote presentation at a telehealth conference about how telehealth had been transformative for me, and where I saw it needed to improve.

Then I got invited to collaborate as a patient on research and other projects, and things continued from there. I also learned (took a while!) that you don’t have to work for free as a consumer when all the other members of the team are being paid. I’m so lucky that I have been able to almost DIY-build a career in this space that I love!

I now do work in which I lead research and institutional change projects, working collaboratively with other health consumers.

I provide support, training and mentoring for other consumers and I get to be a health consumer representative in my own right in some digital health and mental health projects. I’m a consumer member of the Australian Government’s Medical Services Advisory Committee. We assess new medical services, tests and treatments proposed for public funding, look at the safety, effectiveness, cost-effectiveness and total cost and make recommendations to the government about whether they should be assigned a Medical Benefits Schedule item number, or be funded in a different way.

Why did you decide to join the Health Consumer NSW Board?

As an individual member, I have long admired Health Consumers NSW (HCNSW) as a small organisation punching well above its weight. Seeing HCNSW call out transparency and integrity as core values, I thought ‘OK this is my jam now!’

I believe that the 2023-26 Strategic Plan is the right one and that the organisation is well-placed to deliver on it. I’m also a restless and impatient person and thought I best get more involved rather than upset with waiting for consumer involvement to become business as usual! HCNSW already had a strong Board and great team, and I wanted to be part of this effort.

What was the process?

I had been thinking about getting more involved with HCNSW and I love strategic thinking and governance, and then saw the Board vacancy advertised.

I’m a single, disabled, full-time working parent of a 9-year-old, so, the next part of the process was to carefully study my calendar to make sure I actually would have time to do this work!

Then I studied up on HCNSW’s historical annual reports, talked to the chair and CEO, attended an information session, and spoke to the leadership of the Physical Disabilities Council of NSW where I’m a member. They agreed to nominate me. We stated the case for why I think I can be a useful member of the Board in the application form. The rest is history!

What would you hope to see HCNSW do in the near future?

Invest in diversifying our membership and in building, upskilling and supporting a diverse talent pool of excellent consumers to deliver consumer involvement in research training. We should ensure we provide this training in radically inclusive, culturally safe and accessible ways.

What do you think is the one most important thing in community and health consumer engagement right now?

I think it’s urgent that we get properly, and actively involved in data, digital health and AI! We should do everything we can to make sure that traditionally marginalised and geographically isolated people are represented and involved in decisions about AI as well as in machine learning algorithm training data because digital health has the potential to be transformative for gender, race and disability justice.

 

Thank you for the interview, Gill and welcome to the HCNSW family!