Involvement and engagement events

Mini Citizens’ Jury (February 2020)

In February 2020, 10 radiotherapy patients and carers came together to hear evidence and decide on an appropriate design for the RAPID-RT study.

The conclusions of the jury were used to develop the RAPID-RT funding proposal.

Focus group (March 2022)

Six patients and carers with experience of lung cancer or radiotherapy gathered on Zoom to discuss whether a possible increase in severe side effects from radiotherapy treatment was acceptable if the survival rates increased.

There was unanimous agreement that an increase in severe side effects was acceptable if it also meant more people were alive one year after treatment.

Citizens’ Jury (May 2022)

In a two-day event held at Friends’ Meeting House, 24 jurors heard talks to help them decide on an appropriate consent model for RAPID-RT, which uses anonymised patient data for research purposes.

74% of jurors thought that an opt-out mechanism was most fitting. Jurors were also asked how they wanted information about the study to be delivered. All jurors agreed that they would like a simple written information sheet and for the study to be introduced to them by a clinician.

We incorporated this verdict into the study design.

Hear from our jurors in these short videos:

Stakeholder event (July 2023)

We held a stakeholder engagement event including our RAPID-RT patient advisory group.

The group discussed the Delphi study we are running to look at how a current patient questionnaire collects information on patient side effects. They also discussed how patients should be informed if real-world data use became routine practice and fed this back to the clinical and research teams.

Quality-of-life survey

Our patient advisory group helped us to design a survey to see if current questionnaires given to patients to tell their clinical team about their quality of life and side effects worked for patients with lung cancer who received radiotherapy.

Research with patients and the public

Interviews with patients on RAPID-RT

We spoke to patients who took part in the RAPID-RT data study by sharing their data with the team. They were asked how they felt about sharing their data for the rapid learning study. Learn more about rapid learning.

Patients thought the information they had received on the study (a simple two-page information sheet) was clear and jargon-free. They liked that their doctor personally spoke to them about the study. They thought using their data anonymously in this way was ok, and they were pleased that, by using their data, it might mean doctors can make treatments for future patients better.

Verbal opt-out to stop their data being used was welcomed.

Focus groups for planning the People’s Forum

We’ve conducted four focus groups with different groups of participants to help design the People’s Forum.

The groups included patients with experience of radiotherapy, people who have supported loved ones through cancer and radiotherapy treatments and members of the public throughout Greater Manchester including communities that are less likely to be included in research.