Beyond the Symposium

On 17 July 2026, almost exactly five years after I signed a clinical-trial consent form, I contributed to Macquarie University's Consumer-Engaged Cancer Research Symposium.

Until then, I had spent years asking what research, treatment and the people around me could do to keep me alive.

At the symposium, the question shifted.

What could research learn from the life being lived around the trial?

I was not there to tell anyone what to do. I could only relate my experience as it was — what helped, what was difficult, what the system captured, and what it did not.

The event ended. The questions did not.

What I Heard in the Room

Before the questions, the day itself deserves recording — because the day was people.

The symposium existed because Yu Ling took the initiative to bring consumers, clinicians and researchers into one room, and it held together because Victoria's organisation made the day feel coherent and well held. Those are exactly the kinds of contributions my own story keeps pointing to: someone deciding to build the connection, and someone doing the quiet work that makes it function.

Dr Dhanusha spoke with an honesty I did not take for granted — about the complexities and imperfections of research, rather than a sanitised version of it. Hearing the person who ran my trial speak that openly made it easier for everyone else in the room to be honest too.

Jenny turned appreciation into a call to action. It would have been easy for the consumer stories to be received warmly and left there; she pushed the discussion toward what should actually happen next.

The other consumer contributions revealed realities that data and formal presentations do not naturally carry — each story exposing a different corner of the same system.

Simon's presentation on liquid biopsy showed the scientific frontier sitting right alongside the human questions: extraordinary technology, and the same old challenge of making sure it reaches a person.

Leslie contributed a perspective I had not anticipated — a reminder that the room always knows more than the agenda suggests. And Helen's closing remarks, especially her appreciation of hearing the consumer stories, told me the format had done its work.

The small-group discussions were where the day became comfortable. It is easier to be candid around a small table than a lectern. I am grateful, too, to the pair who facilitated our implementation discussion — a startup volunteer and a doctor whose names I did not manage to keep, which is its own small argument for better records.

What Research Measures — and What Life Measures

Clinical research measures carefully.

It records scans, pathology, blood results, adverse effects, drug doses, progression and response. Those measurements matter. They make evidence possible.

But while the trial measured my disease, life was measuring something else.

Could I climb stairs? Could I carry groceries? Could I stand long enough to cook? Was I breathless? Was I frightened? Could my daughter take another day away from work? Could we manage one appointment for blood tests, another for scans and another for the doctor? Could I remain in Australia long enough to continue treatment? Could I afford the part that sat outside trial cover, insurance or ordinary access?

These were not peripheral details. They shaped how treatment was actually lived.

My records documented cancer with precision. They did not fully document the effort required to keep showing up.

Is Access a Doorway — or a Pathway?

Being accepted into a clinical trial was not one decision.

It was a pathway made up of many decisions.

I was an international person living in Australia on a temporary medical visa. Before entering the trial, years of records had to be reconstructed across countries. Eligibility had to be assessed. Appointments had to be coordinated. Insurance, trial funding and international billing all operated differently.

Even after I entered, access had to be maintained.

The practical question was never simply: Was I eligible?

It was also: Could I remain connected to the treatment, the clinicians, the records, the medicines and the country in which the care was being delivered?

Access is often described as the point at which someone enters research.

My experience made me wonder whether access is better understood as the entire pathway that allows a person to enter, remain, continue and eventually transition beyond the formal trial period.

What Happens Between the Appointments?

A great deal of the work of illness happens outside the clinic.

There were calls, forms, bookings, bills, transport arrangements, reports, medication questions, insurance queries, visa documents and decisions about when something was serious enough to raise.

There were days when blood tests, scans and consultations were scheduled across different buildings or different days.

For the system, these were separate appointments.

For us, they were one continuous burden.

My daughter Smriti learned to drive, took leave from work, answered calls in waiting rooms, helped coordinate appointments and carried the constant mental pressure of my treatment, diet, diabetes, blood pressure and future.

At my first diagnosis she was a child in Class 9.

Years later, she was still carrying work that rarely appeared in any record.

The person receiving treatment is not the only person living the treatment.

Could research find better ways to recognise the labour carried by families — not only emotionally, but practically, financially and professionally?

Who Makes the Science Reach a Person?

Five years inside a clinical trial taught me that the most important intervention was not always the drug.

I experienced the intervention as a package.

The medicine mattered. So did the oncologist who was prepared to look at the whole situation. So did the trial nurse who coordinated the details, arranged letters, guided me through billing problems, noticed what was not working and continued to advocate after the formal trial period. So did the radiologist who looked deeper. So did the friend who took me to him. So did the daughter who kept showing up. So did the mother, brother and friends who stood behind us.

Dr Dhanusha Sabanathan did more than prescribe. Jenny Gilchrist did more than coordinate. Dr Himanshu Kaushik did more than read an image.

Each person saw something the formal system alone might not have held.

When the trial ended and continued Palbociclib was not automatic, Dhanusha and Jenny explored every available avenue. Pfizer ultimately agreed to continue supplying it.

That continuation was not a line in a protocol.

It happened because people advocated.

Can Continuity Be Designed Before the Trial Ends?

A trial has a defined beginning and end.

A person's illness does not.

When the experimental drug was no longer available, the question was not only what the study had learned.

The question for me was: What happens to the treatment pathway now?

Clinical trials rightly require protocols, endpoints and defined periods.

But for the person living inside them, the end of the trial may be the beginning of another period of uncertainty.

Who remains responsible? Which medicine continues? What is funded? What moves to private insurance? What becomes unaffordable? Who explains the transition?

Could continuity after the formal trial period be considered from the beginning?

Could the exit be designed as carefully as the entry?

What Does "Tolerable" Mean?

The trial asked about side effects and quality of life.

Compared with my earlier chemotherapy and radiation, the cancer treatment itself was often more manageable than I had feared.

But cancer was not the only illness in my body.

I was also living with diabetes, hypertension, weight, breathlessness and reduced physical ability.

Jenny referred me to an endocrinologist.

Ozempic was tried for diabetes and weight, but the nausea, gas and aversion to the smell of food made it intolerable for me. I stopped it.

At one point, Dhanusha said she was less worried about the cancer than about the danger posed by my diabetes.

That sentence stayed with me.

A cancer trial may be focused on one disease, but the person inside it is not divided into departments.

Could quality-of-life assessment capture not only whether the study drug is tolerable, but whether the whole treatment pathway is helping the person function?

Could linked conditions be treated as part of the lived research context rather than as background noise?

What Never Appeared in the Medical Record?

My records contained extraordinary detail.

They knew the size of lesions. They knew blood counts. They knew scan intervals. They knew medicine doses.

They did not know:

• how many stairs I could climb
• whether I could carry groceries
• how breathless I felt
• how much work my daughter missed
• the fear attached to every scan
• the strain of living on a temporary medical visa
• the uncertainty around work rights
• what it meant to remain professionally capable but legally unable to work
• the financial pressure of maintaining treatment away from one's home country
• the effect of losing my mother during treatment
• the fear that the care holding me together might become inaccessible

These were not separate from health.

They were part of the experience of health.

Perhaps the question is not whether every life detail belongs in a clinical record.

Perhaps it is whether the system has any place at all to recognise what those details are doing to the person's ability to continue.

Could the Participant Have a Better Record Too?

At the beginning of the trial, seven years of history had to be assembled from reports across India and Australia.

Over time, I created my own longitudinal tracker.

I wanted one place where I could see:

• diagnoses
• scans
• pathology
• blood tests
• medicines
• adverse effects
• surgeries
• decisions
• changes in function
• what happened before and after each treatment change

The hospital had records. The trial had records. Radiology providers had records. Pathology providers had records. Insurance had records.

I had fragments.

That made me wonder about a secure participant portal with:

• a clear chronological timeline
• consultation summaries
• reasons behind major decisions
• scan and pathology links
• medicines and changes
• a place for the participant's own observations
• secure access across providers and countries
• search that does not require remembering which report contained which detail

Dhanusha helped me obtain copies and access what I needed.

But should access to one's own story depend on finding the right person willing to bridge the systems?

Where Might Artificial Intelligence Help?

Artificial intelligence interests me because much of the difficulty I experienced was not caused by an absence of information.

It was caused by fragmentation.

The information existed. It sat in different reports, systems, countries, appointments and memories.

AI may be able to help organise and connect:

• years of medical history
• scan progression
• treatment changes
• pathology
• chronic conditions
• participant-reported changes
• family burden
• pending follow-ups
• gaps between decisions and action

It might help generate a usable longitudinal summary before a consultation. It might show why a decision was made. It might help a participant find the relevant part of a five-year history without searching dozens of files. It might reduce repetitive administrative work for clinicians and coordinators. It might notice a gap.

But the future I am interested in is not artificial intelligence replacing Jenny, Dhanusha, Himanshu or the people who looked beyond the obvious.

It is technology carrying more of the repetitive, administrative and pattern-recognition burden so that people have more capacity for judgment, curiosity, partnership and care.

AI can connect records.

It cannot replace the moment when someone decides not to let another person fall through a crack.

How Do We Measure What Matters?

Research impact is often measured through recruitment, retention, publications, trial outcomes, policy influence and implementation.

Those measures matter.

But the symposium left me wondering whether impact might also be visible in smaller, human outcomes.

Did a person understand what was happening? Could they remain in the trial? Was the family burden reduced? Were appointments coordinated better? Did someone avoid repeating their entire history? Was a transition planned before treatment ended? Did a participant feel able to speak honestly about what was not working? Did the system learn from the experience quickly enough to help the next person?

The strongest result is not always dramatic.

Sometimes it is the difference between someone continuing and quietly disappearing from the pathway.

What Did Consumer Engagement Mean to Me?

Before the symposium, I associated research primarily with what I had received.

At the symposium, I saw another possibility.

Lived experience could become part of how questions are framed, how pathways are designed and how impact is understood.

Not because one person's experience represents everyone. Mine does not. I am an outlier in many ways.

But unusual cases can expose assumptions that remain invisible when systems are designed only around the centre of the bell curve.

Consumer engagement, to me, does not mean adding a personal story after the research design is complete.

It means allowing lived experience to shape the questions early enough to matter.

It also means making space for disagreement, uncertainty and contradiction.

I can be profoundly grateful for the care I received and still ask what could have been better.

Gratitude and honest reflection are not opposites.

What Stayed With Me After the Symposium?

I went to the symposium thinking I was contributing one story.

I left seeing that the story sits at the meeting point of several larger questions:

• how research measures value
• how access is sustained
• how families carry invisible work
• how continuity is managed after trials
• how records remain fragmented
• how chronic conditions sit beside cancer
• how AI might support rather than replace people
• how consumers can be involved before systems are finalised

I also left with a clearer sense of where my own work may be heading.

My professional life has always been rooted in design.

I have worked across clothing, interiors, real-estate development and business because I am drawn to the same underlying work: understanding people, recognising connections and translating complex needs into something practical.

Cancer brought that instinct into healthcare.

The symposium did not give me a finished answer.

It gave shape to a direction.

I am increasingly interested in human-centred, AI-first work at the intersection of cancer research, lived experience, systems thinking and design.

Not as someone claiming to know how research should be run.

As someone who has lived inside one part of the system long enough to see where its strength came from, where the burden sat, and where better connections might help the person who comes next.

The Question I Carried Home

My outcome was shaped by science.

It was also shaped by advocacy, coordination, trust, family, access, records, persistence and people who did more than their formal role required.

The symposium is over.

The question it left me with is not.