Centre for Drug Development: Patient involvementCentre for Drug Development: Patient involvement
Tailored Patient Involvement in Clinical Trials
At Cancer Research UK's Centre for Drug Development (CDD), no two trials are the same. It’s important not to approach patient involvement from a “one size fits all” mindset. Here, we share our experience of tailoring patient involvement according to the design and needs of each individual trial.
Improving Patients’ Experience of our Clinical Trials
We are committed to improving our patients’ experience and increasing the quality and impact of our work by consulting, collaborating and partnering with people who have been affected by cancer. The CDD understand the significant value that patient involvement can contribute to our work and we look to routinely partner with people affected by cancer in the way we plan, conduct and share results from our trials. We seek to better understand the experiences and needs of patients, allowing us to design clinical trials that are better suited to our patients and to optimise the trial information we provide to patients. We hope this will encourage more patients to participate in our trials, improve the quality of data we collect and ultimately accelerate the development of new treatment options for people with cancer.
An app for Patients on our Clinical Trials
Our collaboration with Stitch creates a unique opportunity for each patient to manage their own trial journey with an app so we can hear directly from patients throughout the trial. CDD worked with CRUK's Patient Involvement Network to create the specially tailored app Trialmap which is being piloted on three of our clinical trials. Patients on these trials are able to view information about the trial, get reminders about appointments, contact our nurses for support and feedback their experiences. We will apply their insights to design more patient-centred clinical trials for the best possible experience for our patients.
The CDD strives to:
- Design trials that are optimised to improve the scientific understanding of new treatments whilst limiting the burden of clinical assessments on our patients
- View our patients not as “subjects” but as collaborators whose participation throughout the trial process is vital to its overall success
- Ensure there is an open dialogue between sponsor, investigator and patients
The clinicians and researchers are the experts …. but what I bring, the patients bring, is expertise of living with the disease. Bring this together and look at the strength that this gives to research
Margaret Grayson MBE, CRUK Patient Involvement Network Member
Embedding a culture of patient involvement
To ensure the patient experience is a key component of our work, the CDD Patient Involvement Working Group was formed in 2017. The group’s main objectives are to initiate, promote and facilitate patient involvement on our trials and oversee process changes to support this. The group is made up of representatives from each functional team within the CDD. They
- Train all staff members on any patient involvement process changes, activities and initiatives
- Maintain tools and materials to support staff involving people affected by cancer in our trials
- Encourage staff to share their experiences of collaborating with patients and the contributions these patients have made
What you need is an intelligent programme for involving patients in the way that research is designed and conducted, and some dedicated capability for making sure that you are reaching the right constituency of people. So you are bringing the right people on board at an early stage to the research design.
Prof Peter Johnson (former Chief Clinician at CDD)
Involving Patients in our Work
Initiatives undertaken by CDD include:
- Incorporating a process for Informed Consent Documents to be reviewed by patient groups. Updating these documents based on patients’ feedback allows us to present trial information more clearly so that it is better understood by prospective trial participants;
- Including patient representatives on Trial Steering Committees to advise on the ongoing progress of our active trials and considerations for patients taking part;
- Creating toolkits and guidance for CDD staff on how to involve patients and conduct patient involvement activities;
- Allowing a budget in all CDD trials to cover patient and carer refreshments and parking costs, in addition to travel costs and costs for patient involvement activities for the trial;
- Introducing patient experience feedback questionnaires on CDD trials which are reviewed routinely to see if any feedback received can be incorporated into our trials, for the benefit of other patients.
The CDD Patient Involvement Working Group is supported by the CRUK Patient Involvement Team, who manage patient involvement across the charity as a whole. You can find out more about their work below.
CDD presented the results of our pilot initiative to collect feedback on our clinical trials at the NCRI Virtual Showcase in 2020. We gained valuable feedback to improve how we run our trials and improve the information we give out.
Patient Centred Clinical Trials – How important are they?
Watch Professor Peter Johnson, National Clinical Director for Cancer at NHS England, and Margaret Grayson MBE, a cancer patient and member of CRUK’s Patient Involvement Network, discuss the patient's role in clinical trials.