Putting Patients at the Centre of Clinical Trials
Clinical trials are the backbone of blood cancer research – every approved treatment in use today started with a clinical trial. Behind every data point is a person with their own blood cancer story, challenges and perspective, which profoundly shapes how treatments are tested and understood.
At the Australasian Leukaemia and Lymphoma Group (ALLG), we are committed to patient-centred research, ensuring that our clinical trial design is ethical, inclusive and responsive to real-world needs, capturing outcomes that reflect the patient experience. This care generates trust in ALLG research, long-term engagement and most importantly improves survival rates and quality of life for patients with blood cancer.
Designing Trials Around Patient Needs
Patient-centred trials prioritise patient input, informed consent and clear communication and round-the-clock support throughout the clinical trial. Trial design strategies such as flexible visit schedules, options to utilise telehealth technology, and recording of patient-reported outcome measures (PROMs) help capture critical information about quality of life, symptom burden and treatment experience from the patient perspective to ensure trial results that reflect real-world patient experiences. These insights support research findings that are actionable, relevant and ultimately more likely to improve outcomes for the broader community.
At ALLG, we work closely with clinical trial sites and participants, ensuring that patients’ needs are prioritised from the first visit to the final follow-up. By fostering inclusive, respectful collaboration between researchers, clinicians and patients, we deliver high-quality research that changes practice and impacts people’s lives for the better.
Lived Experience Leading Change
Patient-centric research is more than just trial participation – it involves patients having a considered and valued voice. ALLG’s Consumer Representative Panel gives blood cancer patients a voice in research priorities, trial design and implementation, helping ensure that ALLG trial protocols and outcomes are relevant and meaningful. By incorporating lived experience into our trial development and implementation pathways, ALLG is addressing patient priorities, improving trial accessibility and delivering impactful results for patients with blood cancer.
Meet our Consumer Representative Panel
Anne Hodgson
Acute Myeloid Leukaemia Survivor
“The drugs and protocols offered to patients during clinical trials come at no cost and participation in trials for some patients may give them opportunities and hope, that may not have been accessible otherwise. Participation in a Clinical Trial also means regular and careful attention from Health Professionals in addition to the care offered by your own Specialist.”
Steve Towell
Mantle Cell Lymphoma Survivor
“Life is good, and I am living it, but now I feel like I need to give something back. I’ve been doing some fundraising and a little public speaking, which has led me into ALLG as a Consumer Representative. I am hoping I can do some more good work and help others to get through it a little easier than I did. Clinical trials are the only way we get new and better treatments. That’s what the ALLG is all about.”
Pam K
Acute Myeloid Leukaemia Survivor
“If I had acute myeloid leukaemia (AML) 30 years earlier it would have been a death sentence, but research has made survival not only possible but has improved survivors’ quality of life. Hopefully in another 30 years’ time a blood cancer diagnosis will just be a minor inconvenience.”
John Stubbs AM
Chronic Myeloid Leukaemia Survivor
“On 1 March 2001 I underwent a Bone Marrow Transplant. As a former cancer patient who underwent a clinical trial, I now see it as my job to promote, engage and encourage access to cancer research and clinical trials.”
Chris Kershaw
Non-Hodgkin Lymphoma Survivor
“After being told I had a tumour in my pelvic bone and after reviewing the trial information, I was placed in the care of Prof Hertzberg and all the wonderful nursing professionals at POW. I had an exceptional experience on the trial and have remained in remission ever since. I have just recently joined the CRP to
help make a difference by sharing my journey and experience.”
Emma Priest
Hodgkin Lymphoma Survivor
“Research is so important to continue to improve treatments for diseases and conditions so that we can either eradicate them or manage them effectively for improved quality of life.”
Read more about Our Survivor Stories and hear firsthand experiences of people impacted by blood cancer.
Support ALLG: Drive Research that Matters
ALLG is a not-for-profit, mission-driven organisation focused on improving treatments and quality of life for people with blood cancer through innovative, patient-centred research. By supporting ALLG, you will help fund future clinical trials, patient engagement initiatives and evidence-based care that benefits the blood cancer community. Every contribution strengthens our ability to deliver high-quality innovative treatment and care that empowers patient voices and accelerates life-changing treatments. Together, we can deliver Better treatments…Better lives to all people with blood cancer across Australia and New Zealand.
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