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We involve patients, carers and others affected by cancer (also known as ‘Consumers’) in all of our work. Consumers have been involved in several key areas this year such as cancer and COVID-19 and health data and AI.

Consumer involvement in COVID-19 research

The NCRI Consumer Forum continued to meet during the COVID-19 pandemic utilising virtual meetings. As research emerged rapidly into COVID-19 and cancer, the Health Research Authority (HRA) noticed lower levels of patient involvement. Around 20% of studies had patient and public involvement input, compared to the 80% expected in normal circumstances.

The UK COVID-19 Public Involvement in Research Network was established to address this. The network, of which the NCRI Consumer Forum is a member, matches researchers with potential public contributors.

NCRI has run regular virtual Dragons’ Den events, enabling researchers to gain Consumers’ input on their research. The UK Coronavirus Cancer Monitoring Project (UKCCMP) attended a Dragons’ Den to get feedback from Consumers on designing a survey to identify patient priorities for COVID-19 research.

The NCRI Consumer Forum incorporated relevant questions into the co-designed survey and trialled it before distributing it through their networks and associated patient groups. Over 200 people responded and indicated their research priorities. Questions that could be addressed using routinely collected data were highlighted with Health Data Research UK (HDRUK) as part of their prioritisation work with the government’s SAGE committee.

Enabling Consumers to participate in cancer research data projects

NCRI is determined to seize the significant opportunity to accelerate cancer research by facilitating the coordinated collection and secure sharing of high-quality health data for research purposes. Essential to this is that Consumers can participate fully in health data research through their patient and public involvement roles.

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Consumers said more guidance or support would help with their participation in health data projects

Consumers and patient public representatives from NCRI, HDR-UK, DATA-CAN and UseMyData collaborated to develop a modular training package for patient and carer representatives. These resources are currently being reviewed and will be made available to the broader community.

Expanding NCRI Consumer Forum membership and activities

In line with NCRI’s equality, diversity and inclusion policy, we are making changes to ensure NCRI Consumers reflect the diversity of cancer patients in the UK.

To monitor our progress in this area, we are conducting a census of our current Consumer representatives. By understanding the diversity of our existing Consumers, we can monitor if our changes have the desired effect.

As part of this work, we want to educate wider audiences on the role of patients in research, highlighting opportunities with NCRI and across the NCRI Partnership. We have run a webinar titled ‘Demystifying patient and public involvement in cancer research’, attended by 289 people, with a further 177 people watching on-demand. We also published a Q&A answering several questions that we could not answer during the live session.

Following this event, NCRI had its most successful Consumer recruitment round to date, with over 30 new consumers taking up roles on NCRI Groups.

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