Policy priority
Equitable access to pancreatic cancer clinical trials
Where someone lives — and what they can afford — should not be an avoidable barrier to being considered for a clinical trial.
We are calling for better referral pathways, support with participation costs, and appropriate opportunities to take part closer to home. Clinical trials are how new treatments are tested for safety and effectiveness. The question this page addresses is who gets a fair chance to be assessed for one.
A note on terms: Health Canada uses “expanded access clinical trials” for a specific pathway to investigational drugs outside a trial. This page is about something broader — equitable access to research participation itself.
The problem
Taking part in a clinical trial starts with an assessment. Eligibility criteria are specific, and no one is guaranteed a place — nor should they be. What should be guaranteed is a timely, informed assessment, and an honest conversation about whether a trial may be appropriate.
That is often not what happens. Trial sites cluster at major academic centres, and participation usually means repeated travel to one. Newfoundland and Labrador has hosted three pancreatic cancer clinical trials in its history — the most recent more than a decade ago. For someone in Atlantic Canada, the nearest recruiting site is often in another province.
Travel time and the costs that come with it — transportation, accommodation, time away from work, a caregiver travelling too — are recognized barriers to participation, particularly for rural and remote communities. Distance turns an already difficult decision into an impossible one.
Our recommendations
These are the Foundation's recommendations — proposals we are putting to the organizations named. They are not commitments those organizations have made.
1
Fund participation closer to home, where appropriate
We are asking provincial cancer agencies, health authorities, and trial sponsors to establish funded arrangements between research centres and local care providers, covering:
- Which assessments and visits can safely happen locally
- Clear responsibilities for testing, monitoring, and reporting
- Training and compensation for local staff
- Direct access to the principal research team
- Escalation arrangements when complications arise
This is not starting from nothing. The Canadian Cancer Trials Network has already developed CRAFT — the Canadian Remote Access Framework for Clinical Trials — to engage local providers and enable decentralized trial delivery in underserved communities. We are asking that it be funded and used.
Not every treatment, assessment, or trial can be delivered locally. Health Canada's draft guidance on decentralized clinical trials puts participant safety, appropriate oversight, and the ability to meet study objectives first — and so do we.
2
Cover the cost of taking part
We are asking trial sponsors, funders, and health systems to adopt a transparent participation-expense policy for every trial, shared with patients before consent:
- Clear information about which expenses are covered — and which are not
- Travel and accommodation support
- Expenses for a caregiver whose presence is necessary
- Direct booking or advance payment where feasible, rather than paying out of pocket first
- Defined reimbursement timelines
- A named contact for resolving payment problems
Reimbursing a participant's expenses is different from compensating their time or lost income. This recommendation is about expenses: no one should have to pay out of pocket for the privilege of helping test a treatment.
3
Make trial consideration and referral routine
We are asking cancer programs to build a consistent referral process, so that being considered for a trial does not depend on a patient knowing to ask:
- Discussing whether a trial assessment is appropriate, as a standard step in care
- Looking for potentially relevant trials beyond the treating centre
- A named referral contact patients and clinicians can reach
- Telling patients clearly what records are needed
- Reconsidering options when a patient's treatment situation changes
The objective is access to a timely, informed assessment — not guaranteed enrolment. Many patients will not be eligible for a given trial. Every patient should be able to find out.
4
Publish measures that show whether access is real
We are asking cancer agencies and research networks to report access as a chain, with each stage counted separately:
- A trial is listed
- A site is open and recruiting
- A patient is referred or assessed
- A patient enrols
- A participant is able to remain in the study
A count of trial sites alone cannot show whether people can actually take part. These are the measures we will use to judge progress on this page's recommendations.
What the evidence shows
- Travel and cost are barriers. Travel time and associated costs are recognized barriers to trial participation for rural and remote communities. (3CTN, CRAFT)
- A Canadian framework already exists. CRAFT was developed to bring trial options to underserved communities by engaging local care providers and enabling decentralized delivery. (3CTN)
- Decentralized is not simply “by video.” Bringing trial activities closer to home requires resources, coordination, and safety oversight. (Health Canada draft guidance)
- Participation carries potential benefits and risks. A treatment under study may be better than, similar to, or worse than standard treatment, and an individual participant may not benefit. Understanding a trial's potential benefits, risks, and demands matters before deciding. (Canadian Cancer Society)
Our work on this priority
Open
Port to Care travel grants
Our own travel grant program helps Atlantic Canadians with the cost of travelling for treatment — including travel related to clinical trial participation. It is a small, immediate answer to Recommendation 2, offered while we press for a systemic one.
About Port to Care →
Published
Provincial report card research
Our Policy Builders of Tomorrow research documented how pancreatic cancer research is distributed across Canada: of 88 CIHR pancreatic cancer grants, 6 went to Atlantic Canada — and none to Newfoundland and Labrador, New Brunswick, or Prince Edward Island.
See the report card →
Ongoing
Drug approval and access tracking
We track pancreatic cancer drug approvals and access routes in Canada and publish what we find, so patients and clinicians can see where treatments stand.
Drug approval transparency →
Progress log
Responses to these recommendations
October 2026 — Recommendations published on this page. Commitments, responses, and remaining gaps will be recorded here as they arrive.
Why this matters to us
Heather's experience exploring treatment options from Newfoundland and Labrador is part of why the Foundation advocates for clearer pathways to research participation. Our policy recommendations draw on that experience, alongside published evidence about access barriers.
Looking for a clinical trial?
This page sets out the changes we are advocating for — it is not a trial listing. If you are exploring participation, start with how trials work, and speak with your care team about whether an assessment may be appropriate for you.
How clinical trials work: phases explained →