Patient partnerships bring relevance to clinical trials

The need for patient engagement in all aspects of clinical trials was an important theme of this year’s Clinical Trials Ontario (CTO) annual conference in Toronto. Delegates heard first hand how patients are critical to clinical trials and clinical trials are critical to patients.   

“If it wasn’t for the knowledge that has been gained through clinical trials over the years, I likely wouldn’t be here today,” said Aldo Del Col, who was diagnosed with multiple myeloma in 2002 at the age of 48, and told he had three to five years to live. Only the continual development of cutting-edge treatments – and being able to access those treatments – has enabled him to far outlive that prediction.

Del Col, who is co-founder of Myeloma Canada, addressed the conference by video, as he was not able to be there in person. He said that the lives of many people continually depend on new treatments being developed. “It’s very, very important that science keeps ahead of disease,” he said.

The CTO Conference is a leading Canadian forum to drive innovation in clinical trials. This year’s conference on March 27 and 28 drew more than 480 attendees, including leaders from the pharmaceutical and medical device industries, academic and healthcare leaders, as well as patients and representatives from patient groups, health charities, research institutions, and government. CTO’s mandate is to strengthen Ontario’s competitive advantages in conducting high-quality, ethical clinical trials; one of the key pillars of this work is to improve patient engagement.

Durhane Wong-Rieger, President and CEO, Canadian Organization for Rare Disease, was one of the speakers who provided a patient perspective. She noted that, while it has been an uphill battle, progress has been made in including patients at the table when it comes to planning clinical trials.

It is crucial, she said, that patients and family members are consulted to provide first-hand experience and ensure medicines or interventions meet patient needs. She gave the example of a drug for children with a rare kidney disease. Parents were struggling with a six-hour dosing schedule because the timing meant they had to give a dose in the middle of the night, and also ensure the child received medication while at school. Parents vouched for the tremendous quality-of-life benefits that a new delivery method with a 12-hour dosing schedule provided.

“Why partner with patients? There are lots of reasons. An engaged patient community identifies what is relevant and important,” she told the audience.

Jesse Hirsh

Keynote speaker Jesse Hirsh, a futurist and digital strategist who lives with a chronic disease, challenged delegates to go a step further and foster health and science literacy in society. “It is not enough to just have results,” he said. “Citizens need to understand your research. The work you do only matters if they understand and appreciate the role science has.”

This is especially important, he added, in a time of “algorithmic authority” when decisions are made by machines and “cognitive authority” when anyone at all can declare themselves an expert on the Internet.

“The only way we are going to defend science is by mobilizing as many people as possible to walk the walk and say, ‘I understand how this research works and I trust the methodology.’ That is the power of citizen science.”

CTO’s work in patient and public engagement includes helping patients find and understand clinical trials, building public awareness of clinical trials, promoting collaboration in the community, and ensuring the patient and public perspective is respected and incorporated in research.

Main image: Durhane Wong-Rieger, President and CEO, Canadian Organization for Rare Disease, was one of the speakers who provided a patient perspective

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