What's Next When Standard of Care has Failed? – Understanding Motivations for Patient Participation in Research or Considering Unfunded Medication
| Thursday, August 14, 2025 |
| 10:52 AM - 10:59 AM |
| Ballroom 2 and 3 |
Overview
Dr Grace Gard
Speaker
Dr Grace Gard
Clinical Research Fellow
Wehi
What's Next When Standard of Care has Failed? – Understanding Motivations for Patient Participation in Research or Considering Unfunded Medication
Abstract
Background and aim
Many cancer patients are seeking further therapy opportunities after completing re-imbursed standard of care treatment. We aimed to explore patient motivation for clinical trial participation, and attitudes to hearing about unfunded medication options.
Methods
A co-designed survey including six questions was created, with clinician researcher and consumer input. Responses to questions were not mandatory. This REDCap based survey was promoted widely through hospital and research institution consumer groups, social media, outpatient clinics and email newsletters and open between September and October 2024.
Results
109 individual survey responses were received. 44 (40%) respondents identified as a current or former cancer patient and three (3%) as previous clinical trial participants. Motivation for trial participation included: contributing to research that may lead to improvements for future patients (72, 94%), to access a new treatment (64, 84%), or having a treatment option (41, 54%). Reasons to decline trial participation included; risk of treatment not working or risk of side-effects (45, 59%), being involved in research feels like an extra burden at this time (30, 39%), financial cost (29, 38%), time commitment (23, 30%), and uncertainty as to the value provided. (19, 25%). Out of 75 respondents to the question, 40 (53%) strongly agreed or 19 agreed (25%) felt potentially beneficial treatment options that were currently unfunded should be discussed, regardless of the cost.
Conclusion
Potential benefit for future patients was a major driver when patients are considering trial participation, highlighting that this is an important topic to cover as part of a discussion of trial opportunities. Our survey findings highlight that the burden of clinical trial participation needs to be considered in designing clinical trials and when discussing clinical trial opportunities with patients. Along with presenting trial opportunities, patients should be informed of any available unfunded therapy options, regardless of cost.
Many cancer patients are seeking further therapy opportunities after completing re-imbursed standard of care treatment. We aimed to explore patient motivation for clinical trial participation, and attitudes to hearing about unfunded medication options.
Methods
A co-designed survey including six questions was created, with clinician researcher and consumer input. Responses to questions were not mandatory. This REDCap based survey was promoted widely through hospital and research institution consumer groups, social media, outpatient clinics and email newsletters and open between September and October 2024.
Results
109 individual survey responses were received. 44 (40%) respondents identified as a current or former cancer patient and three (3%) as previous clinical trial participants. Motivation for trial participation included: contributing to research that may lead to improvements for future patients (72, 94%), to access a new treatment (64, 84%), or having a treatment option (41, 54%). Reasons to decline trial participation included; risk of treatment not working or risk of side-effects (45, 59%), being involved in research feels like an extra burden at this time (30, 39%), financial cost (29, 38%), time commitment (23, 30%), and uncertainty as to the value provided. (19, 25%). Out of 75 respondents to the question, 40 (53%) strongly agreed or 19 agreed (25%) felt potentially beneficial treatment options that were currently unfunded should be discussed, regardless of the cost.
Conclusion
Potential benefit for future patients was a major driver when patients are considering trial participation, highlighting that this is an important topic to cover as part of a discussion of trial opportunities. Our survey findings highlight that the burden of clinical trial participation needs to be considered in designing clinical trials and when discussing clinical trial opportunities with patients. Along with presenting trial opportunities, patients should be informed of any available unfunded therapy options, regardless of cost.
Biography
Dr Grace Gard is a Medical Oncologist at Western Health and a Clinical Research Fellow at WEHI in Melbourne. Clinically she works with patients with lung and GU cancers. Her research interests include real world data collection, patient education and utilising consumers meaningfully in cancer research.
Session Chair
Tim Clay
St John Of God Subiaco Hospital
