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| Dr Ashley Ng presenting at the Diabetes Expo on a researcher's perspective on peer support for diabetes communities |
In 2009, my first year of my health sciences undergraduate degree, I was diagnosed with diabetes.
Fast forward many years later, I found myself juggling multiple hats of a consumer as a person living with diabetes or diabetes advocate, a healthcare professional, and a researcher. Many assumed that I had a rock-solid idea of my career from the start given that all the pieces of the puzzle fit nicely when they see my academic journey on paper. Nothing could be further from the truth.
Soon after I was diagnosed with diabetes, I started writing a blog on the reflections of life as a young adult with diabetes. Little did I know that this would launch me into the diabetes advocacy spotlight.
Since starting to share my story, I have had people reach out thanking me for shining a light on things that have not been readily discussed or for providing a different perspective. Through the networks I developed, I found myself sharing my story in front of very important people – from diabetes community members, healthcare professionals, to politicians within Australia and internationally.
While it has been a privilege to be able to be a voice for the diabetes community, I felt like I was not being taken seriously and I wasn’t making a difference.
I thought that perhaps if I had more credentials, it would lend strength and authority to my advocacy voice and changemakers would start to take me seriously. After my undergraduate studies in health sciences and nutrition, I completed my Master in Dietetics to gain accreditation as a practising dietitian, which enabled me to work more closely with the diabetes community. During my studies, I realised that clinical work perhaps wasn’t for me. I found numerous barriers that patients and clinicians faced within the healthcare system the prevented the ability to provide high level personalised care in an efficient manner. Through my placements and personal experience, I saw really passionate individuals who were trying to change the systems around them burning out and sensed (and shared) the frustration they had.
Realising that, as a clinician, my ability to impact change would be limited, my mentor suggested that I turned a pet project I was working on into a PhD study. It was an option I'd never considered or thought might be an option for me.
What may have been an off-handed comment by my mentor opened a world of possibilities and opportunities for me. After several attempts, I was able to secure a PhD scholarship, which enabled me to focus on developing a mobile health resource for young adults with diabetes to help them navigate the healthcare system, unpack health-related jargon, access diabetes information, and seek support from peers. Interestingly, the further I progressed along my research and especially after earning my doctorate degree, I started to drift away from the diabetes community. Suddenly, I was seen by the diabetes community as one of those researchers sitting in their ivory tower (though, in reality, I was just trying to survive academia). Some said I wasn’t allowed to wear the consumer hat anymore because my perspective was “tainted”.
On one hand, I get it. My perspective is biased. As a person living with diabetes with levels of insider knowledge about the healthcare and research world, I have the confidence to voice my concerns and advocate for myself when navigating the healthcare system. Yet, as a healthcare professional and researcher, I never felt I fit in comfortably there either. Thankfully, along the way, I have met some wonderful researchers, clinicians, industry partners and diabetes advocates who are devoted to improving the healthcare system for those who are chronically ill. These people recognise the importance and expertise that each individual brings to the table, whether it research skills, lived or clinical experience, or industry networks.
Working with this wonderful community has made me value and embrace being a lived experience academic. I understand where my conflicts lie but, more importantly, I understand how to communicate with each audience.
As a lived experience academic, I see my role as being the person to bridge the gaps between consumers, healthcare professionals, researchers, and industry stakeholders. By facilitating such connections, we can truly start collaborating to make a difference.
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Ashley’s advocacy is internationally recognised through her past involvement with the International Diabetes Federation, and she currently sits on several diabetes related committees at national and state level as a lived experience academic.
Read Ashley's blog Bittersweet Diagnosis or follow her on Twitter: @hangrypancreas.
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