A new Patient Involvement Panel for our clinical trial governance

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The Centre for Drug Development (CDD) takes new drugs into early-phase clinical trials. They strive to design trials with the help and feedback of people affected by cancer to improve the experience for future participants.

The team wanted to build on existing activities and develop ways for people affected by cancer to influence trial governance. They worked with researchers, clinical staff and people affected by cancer to create the first CDD Patient Involvement (PI) Panel.

Brainstorming and initial ideas

The process for CDD began when we first brainstormed what Patient Involvement could look like in a more integrated setting. We worked with the CDD Patient Involvement Working Group to gather best practice examples.

We used this to consult our Research & Strategy Cancer Insights Panel to get early-stage ideas and advice. Using this initial feedback we took the following proposal to the CDD Leadership Team, highlighting the benefits and need for:

The creation of a medium-sized panel of people affected by cancer
PI representation directly into the Protocol and Safety Review Board (PSRB), which reviews all CDD trials before submission for regulatory and ethical approval.
Opportunities for PI to input into CDD’s strategy.

We agreed to pilot the panel for 18 months.

It’s about bringing the patient voice into clinical trials.

Cancer Insights Panel member

Bringing the role to life

After drafting a role description outlining the role, we returned to the Cancer Insights Panel to ask about what activities the panel could do, the formation and maintenance of the panel, and representation at the Protocol and Safety Review Board (PSRB).

Speaking with this group again was invaluable. It reassured us that we were heading in the right direction, and we left with practical guidance and key advice that included:

Being more specific about essential and non-essential skills we expected candidates to have.
Focus on behaviours needed rather than skills.
The importance of working with and representing a diverse range of people, in line with CRUK’s commitment to Equality, Diversity, and Inclusion.
Consider support and training for panel members and what they'll gain from being on the panel.

From the CDD strategy:

CDD is committed to working hand in hand with patients and their loved ones. One of their strategic objectives is to “actively involve people affected by cancer in improving the way we plan, conduct, and share results from our trials.

Recruiting to the panel

One of our PI representatives, Steve Clark, worked as an equal partner with staff to review, shortlist, conduct interviews, and select successful candidates. From the 25 applications we received for the role, we interviewed 9 people and invited 8 to join the CDD Patient Involvement Panel.

The applications were anonymised, so interviewers were not aware of the candidates’ gender and race until they were taken forward to the interview stage. Along with selecting the best candidates, we focused on getting a good representation of cancer types and experience. Interviewers wanted it to be more of a chat and less like a job interview.

It’s been a real collaborative effort, with lots of learnings. The panel came together for the first time in January and we’re establishing ways of working in collaboration with them.

We look forward to working with the CDD Patient Involvement Panel over the coming 18 months and hopefully beyond!

It's so important we work with the patients and very important we do it right. It has a real purpose: it's not just us using their time. We're together in this and we've got the same goal.

Sarah Halford, Head of Medical Sciences, Centre for Drug Development