A research cohort is often funded as though it were a single-use object.
Recruit the participants. Collect the samples. Answer the funded question. Publish the findings. Close the project.
But a well-designed cohort can become something much more valuable.
The Healthy Optimal Australian Microbiome study was established to help define what a healthy microbiome looks like. That was already an ambitious scientific question. But the study also created something less visible: carefully collected samples, well-characterised participants, established methods, trusted relationships and a healthy reference population against which entirely new questions could be explored.
A cohort built for one purpose had quietly made another piece of research possible.
This is what long-term investment in research infrastructure can do. Its value is not exhausted when the original grant ends or the first paper is published.
It accumulates.
New collaborators arrive with different expertise. New technologies allow old samples to answer questions that could not previously be asked. A dataset collected for one purpose becomes the comparison group for another. Infrastructure becomes a meeting point between ideas. Yet our funding system still behaves as though each research question should arrive as a self-contained project, neatly matched to the wording of the available grant opportunity.
The Clinical Trials and Cohort Studies scheme should be one of the places where sustained investment in cohorts is possible. But when the funding available does not reflect the real cost of establishing, maintaining and following a cohort, researchers are forced to design backwards from the funding envelope.
Reasonable scientific questions are cut down until they fit.
Follow-up periods are shortened. Sample sizes are reduced. Biological samples are collected without enough funding to analyse them properly. Existing cohorts are repackaged to match whichever disease, population or policy priority currently has a funding stream attached to it.
The question is no longer simply: What do we need to know?
It becomes: How can we make what we need to know look like the thing the scheme has decided to fund?
This is not scientific prioritisation.
It is forcing a square peg into a round funding hole and then congratulating ourselves when it almost fits.
The fictional balance
On paper, the budget still balances.
It balances because the missing costs have not disappeared. They have simply been moved somewhere less visible.
Research organisations increasingly attach fees, levies and internal charges to already constrained grants. More of the award is absorbed before the research begins, while investigators are asked to provide additional in-kind support to demonstrate institutional commitment.
But who is actually providing that in-kind support?
It is researchers and clinicians.
It is the researcher preparing the protocol, managing the data and writing the paper during evenings and weekends because the grant did not fund enough of their time.
It is the clinician recruiting between appointments, reviewing results, responding to adverse events and absorbing research activity into an already full clinical workload.
It is preliminary data generated before funding exists. Relationships built over years. Rejected applications. Unfunded follow-up. Samples kept viable and cohorts held together because someone continues to believe the question matters.
Participants contribute their time, information and often parts of themselves.
The institution may record these contributions in a spreadsheet, but the cost is borne by people.
Commitment as an accounting category
When researchers question this arrangement, the response is remarkably consistent.
That is just how research works.
If you want to get ahead, you have to show that you are committed.
Everyone works nights and weekends.
It requires sacrifice.
If I had a dollar for every time I had heard some version of this, I might never have to work in research again.
Commitment has become a convenient accounting category. It allows the system to treat unpaid labour as though it costs nothing because the person providing it supposedly benefits from the opportunity.
The additional analysis becomes commitment.
The weekend spent writing becomes ambition.
The clinician recruiting during an overloaded clinic becomes goodwill.
The years keeping a cohort alive between grants become dedication.
None of these costs disappear because the people carrying them care deeply about the work.
There is a profound difference between choosing to become absorbed in an important scientific question and being told that chronic unpaid labour is the price of belonging in science.
One is intellectual commitment. The other is a workforce model built on scarcity, insecurity and obligation.
Sacrifice may be part of an individual life.
It is not a sustainable research funding model.
Who pays for the tests?
Then comes another familiar suggestion:
Couldn’t the blood tests just be done as part of routine care? Medicare can cover them.
No, friends. That is not an innovative funding strategy.
Medicare funds clinically relevant care. It does not become a research funding stream simply because a test can be ordered through the same pathology service.
If a blood test is clinically required for that individual patient, it may appropriately form part of their care. If it is being ordered because the research protocol requires an additional timepoint, biomarker or standardised dataset, that is a research cost.
Those are not interchangeable purposes.
Calling a research test “routine” does not transform it into clinical care. Knowingly billing Medicare for a test performed for research purposes is not an in-kind contribution. It is potentially an improper claim.
The same principle applies when something goes wrong.
If a participant is injured because of their involvement in a clinical trial, it is not sufficient to point them towards Medicare and treat the public health system as the trial’s insurer of last resort.
A participant may receive immediate treatment through the public system. That does not turn a trial-related injury into an ordinary public healthcare cost. Nor does it remove the responsibilities of the sponsor and the institutions conducting the trial.
A research project cannot claim ownership of the discovery while externalising the cost of the harm.
Research budgets should reveal the true cost of answering the question. They should include the workforce, tests, infrastructure, follow-up, data stewardship, safety oversight and responsibilities created by the research.
Instead, the Australian research balance book has been kept alive through goodwill and a fictional balance.
The family budget line
The missing time is not conjured from nowhere.
It is taken from sleep, rest, health, friendships, children and families.
Every unpaid evening described as commitment is an evening someone else does not get to share with the researcher. Every weekend absorbed by the work is time their family has involuntarily contributed to the research system.
I have heard personal stories of women joining research meetings while in labour, working when they should have been resting before giving birth, or returning to research activity within hours of the birth.
These stories are sometimes told with admiration.
Look how committed she was.
Look how important the work was to her.
Look what she was willing to do.
But these are not simply stories of extraordinary individual commitment.
They are evidence of a culture in which researchers can become so responsible for holding the work together that even childbirth does not feel like sufficient reason to step away.
Families are stakeholders in research.
They provide meals, childcare, domestic labour, emotional support and the endless accommodation of deadlines, grant rounds, late-night writing and weekend work. Their contribution makes the research possible, yet it appears nowhere in the budget.
Perhaps every research application should include a new line:
Unfunded family contribution: hours of shared life transferred to the project.
I am not writing about this only in the abstract.
There were times when I wrote grants during hours that belonged to my family. My children were asked to tolerate the deadlines, divided attention and familiar promise that I would be finished soon.
Sometimes I compensated them with LEGO kits.
LEGO is expensive, so this was not an entirely symbolic payment. But I am not proud of it either.
The kits did not return the time. They were my attempt to compensate my children for something they had never chosen to contribute: their mother’s attention to a research system that required substantial work before it would even consider funding the work.
Sometimes the grant was not even ready.
The scientific question may have been worthwhile, but the project did not yet fit the scheme, the team was not ready, or the application had little realistic prospect of success.
I knew that.
But I wrote anyway because collaborators were expecting an application. Saying no risked being interpreted as a lack of enthusiasm, collegiality or commitment.
More honestly, I feared that it might damage a career that already carried the brand, welted onto it:
Not committed.
I had spent around eight years outside the conventional academic trajectory having and raising children.
The research balance book might record those years as interrupted productivity.
They were not.
I gained valuable skills.
I volunteered. I built relationships and contributed to my community. I became extremely good at time management, negotiation, conflict resolution and counselling humans whose emotional regulation was still under development.
That last skill has proved unexpectedly transferable when working with adult humans in academic settings.
Most importantly, I learned something about living as a human.
I learned how health, care, work, institutions and family life collide outside the clean boundaries of a research protocol. I learned that people do not experience systems one policy, service or outcome measure at a time.
That knowledge did not make me less capable of research.
It made my thinking deeper, more practical and more connected to the lives research is supposedly intended to improve.
But academic careers are measured through visible outputs and uninterrupted momentum. What cannot be entered as a publication, grant or citation is easily treated as absence.
So I overcorrected. I wrote the grant.
I stayed collaborative.
I demonstrated commitment.
And I used LEGO kits to compensate my children for the family time I had transferred back into a system that had already failed to recognise the value of the years I spent raising them.
I am not proud of that.
But neither will I describe those years as lost time or apologise for having lived them.
The loss belongs to a research system that still struggles to recognise human experience as a source of capability.
The debt
The unpaid hours are not entered.
The clinical workload absorbed by doctors, nurses and allied health professionals is not entered.
The infrastructure maintained between grants is not entered.
The public healthcare resources quietly used for research are not entered.
The opportunity cost of keeping a cohort alive is not entered.
The time taken from children and families is not entered.
The risks carried by participants may be acknowledged ethically, but they are not always adequately represented financially.
Once those costs are excluded, the project can be described as efficient.
Everyone wants evidence that someone else has skin in the game.
Researchers provide unpaid labour. Clinicians absorb research into clinical workloads. Participants contribute their time, information, biological samples and risk. Health services provide rooms, equipment and infrastructure while continuing to deliver care.
Families surrender shared life to the project.
Then the research organisation takes its levy from the grant and asks the investigators what more they can contribute.
How much more skin does the game require?
The Australian research system is very good at asking what is new. It is less consistent at recognising what has already been carefully built, what it genuinely costs to sustain, and who is actually paying when the formal funding falls short.
We often talk about the cost of establishing cohorts.
Perhaps we should talk more honestly about the cost of underfunding them, carving pieces from their grants and expecting researchers, clinicians, participants, families and the public health system to make up the difference.
The books only balance because the labour, goodwill, public subsidy, family time and personal risk keeping the system alive have been left off the page.
That is not efficiency.
It is a debt.