Make your voice heard

Date:
06 July 2022

Launched last year, the Cancer Patients’ Voice online platform lets patients and the public shape research and care at – and it’s already benefiting patients.

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Dr Emma Hainsworth, Nurse Researcher at The Royal Marsden
Dr Emma Hainsworth, Nurse Researcher at The Royal Marsden NHS Foundation Trust

Involving and engaging patients and the public in the work we do ensures that our research has better outcomes and that our services function better for the communities we serve.

Launched in early 2021, Cancer Patients’ Voice is thought to be the only online platform dedicated to involving patients, carers and the public in cancer research, treatment and care. It was developed in partnership with patient representatives by the NIHR BRC at The Royal Marsden and The Institute of Cancer Research, London.

The platform provides an easy, secure and interactive way for people to shape our work, complementing more traditional methods of involvement and engagement. Patients and the public can have their say by completing surveys, contributing to ideas boards and joining online forums, at their convenience.

There are a variety of projects to get involved in, from improving NHS support for patients ahead of their treatment and helping to build a new service specifically for older cancer patients, to contributing to the design and conduct of a clinical trial. And, as with all our patient and public involvement and engagement opportunities, the platform allows users to choose their own level of involvement.

Positive impact

"Patients and the public can challenge researchers' preconceived ideas."

“Cancer Patients’ Voice gives people a straightforward way to improve research and care,” says patient representative Fiona McKenzie, who is a member of the Cancer Patients’ Voice Working Group that reviews all new projects before they go live.

“I’ve found it a collaborative experience. I’ve been listened to and I’ve been able to make a positive impact on making the platform as engaging as possible for patients and carers.”

The platform has proved to be a boon for Nurse Researcher Dr Emma Hainsworth. She has used patients’ contributions to help with recruitment to the PROFILE study, a genetic screening project that looks at the genes of healthy men at higher risk of prostate cancer, including men of African or African-Caribbean ancestry.

“Patients and the public can challenge researchers’ preconceived ideas,” Dr Hainsworth says. “We asked for ideas about a video being made to promote the study. The researchers had assumed that it would feature healthcare professionals as well as patients.

“However, the patient representatives were clear that they mainly wanted to hear from patients and the public, as they would be more likely to bring on board the intended audience. This resulted in a more engaging video.”

The video (see below) was launched last August, alongside a wider initiative to raise awareness of the health risks among black men via GPs. This led to a threefold increase in the recruitment of African and African-Caribbean men in 2021.

Continuing collaboration

The Royal Marsden’s Therapies team also reaped the rewards after it switched to telehealth services for patient rehabilitation – introducing video calls, more patient contact via email, and increased telephone assessments and follow-ups – during the COVID-19 pandemic.

The team set up a service evaluation and improvement project page on Cancer Patients’ Voice so more people could get involved in designing telehealth services.

It has since collaborated with patients and staff to decide the collective priorities for these new services, including inclusivity, safety, communication and peer training.

“The platform offers a broader reach than we traditionally have in Therapies,” says Physiotherapist Catherine Sandsund, who took part in the project. “It helped us to attract other patients we may not have heard from, and we benefited from that.

Cancer Patients' Voice

Find out more about how to get involved in our work via your computer, phone or table and how you can make a difference to future research and care