The patient voice helps shape our research portfolio

Medical student and patient representative Max

Reviewing our research portfolio

Clinical trials play an essential role in developing safe and effective new cancer drugs. They also provide patients with access to potentially life-saving new treatments while they are still early in development. Through our Clinical Research Committee (CRC), Cancer Research UK (CRUK) funds nearly 200 clinical trials which are helping us in achieving our ambition of 3 in 4 patients surviving their cancer by 2034. People affected by cancer are right at the heart of this work and are routinely involved in the funding decisions we make. 

In July 2020, we carried out a review of our clinical trials to assess the challenges they faced posed by the Covid-19 pandemic. We wanted to understand if these trials would still be viable in a “post-COVID” world as the pandemic has significantly affected charitable income and resources for supporting research have been reduced. The review included 166 studies of the 180 funded or endorsed through the CRC and took place as virtual meetings on Microsoft Teams. 

The role of Patient representatives 

Initially introduced over 10 years ago as an observational role to ensure due process at funding committees, patient representative roles have evolved to become full voting members of our funding committees. As such they have equal scoring rights, and are bound by the same confidentiality, governance and requirements. Aoife Regan, Head of the Experimental Cancer Medicine Centre, was impressed by the way in which the patient representatives were involved in the review. She said, 

“Without exception, the patient representatives were considered to be well prepared and engaged. They were flexible and accommodating to the tight time frames, new technological requirements and evolving time frames, giving concise, thoughtful and objective feedback throughout. Most importantly, the patient voice was not only heard but carried equivalent weight to that of other panel members.”

For the paediatric/Teenager and Young Adult review, patient representatives with specific experience were recruited. One of these patient representatives was medical student Max Williamson (pictured above). He said, 

“I was really lucky to be involved with this group because it meant that I got to bring about the patient voice. We made direct changes and recommendations, and this is where I feel I’ve made the biggest impact as a patient representative.”

The committee had to make potentially difficult decisions about the future of clinical trials. Involving patient representatives in these decisions gave added credibility to those decisions and outcomes for both the cancer community and to people affected by cancer.

With the potential impact of COVID 19 on cancer patients, care and clinical research, having the patient’s perspective on was essential to the review of the trials. This was particularly the case because decisions made as part of the review could potentially impact on those patients already recruited to trials, but also future cancer patients.