By Natalia Bartolome Diez, Senior Patient Involvement Officer for Research, Cancer Research UK

Published: 6 February 2019

Cancer Research UK has recently launched their refreshed Patient Involvement Toolkit for Researchers. This free, online toolkit will support all researchers to involve people affected by cancer or the public, in a positive and impactful way, in their work. The response from researchers, members of our Involvement Network and other medical research charities has been overwhelmingly positive.

Why create a new toolkit?

Cancer Research UK has played a critical role in developing 8 of the world's top 10 cancer drugs. Today, 2 in 4 people will survive their cancer, but at Cancer Research UK our vision is to increase survival rates so that 3 in 4 people survive their diagnosis by 2034. The experience and insight of people affected by cancer are vital in helping us to achieve this. We know that high quality Public and Patient Involvement (PPI) helps improve the quality and relevance of research, leading to research that better meets the needs of patients. We identified a gap in the existing support offered for researchers, for an open-access area, collating key resources needed to do effective PPI. We developed our user-focused researcher toolkit to increase understanding of PPI, as well as incentivising, motivating and supporting researchers to develop high quality PPI activities.

What the Toolkit offers

The new toolkit is hosted on the Cancer Research UK website and is open access for all to use. It provides step by step guidance, information, tools and resources to enable researchers to effectively involve people affected by cancer in their research. Worksheets have been developed to help researchers define their needs and identify which parts of the toolkit will be most relevant to them. The toolkit also includes

• Templates of role profiles and interview questions for researchers to adapt
• Tips on facilitating PPI and writing in lay
• Advice on where to advertise
• Information on the costs and timelines involved

Additionally, the toolkit includes the resources required by researchers to feedback the impact of the PPI activities they have chosen, to those that they involve and their funders.

Response so far

Since going live, the toolkit has been hugely successful with researchers feeding back that it is easy to use, structured and comprehensive. Simon Denegri, NIHR National Director for Patients, Carers and the Public stated, “I was incredibly pleased to see Cancer Research UK’s initiative in creating such a useful resource to support all researchers. The toolkit is leading in its kind and will be greatly useful in producing higher quality patient and public involvement in research. Proof of this can be seen in the extremely positive reaction it has received on social media.” So far, the toolkit has reached over 500 unique users in nearly 30 different countries.

Ongoing Development

We hope that researchers, charities and advocates of PPI will find it a real asset and will help to promote the toolkit. Cancer Research UK is keen to learn how researchers are involving people affected by cancer in their work, what impact it is having and if there is anything that would be useful for researchers to know for future reviews. We’ll be asking everyone who used the toolkit to complete a short, 10 minute survey. This feedback will be reviewed and the toolkit refined on an ongoing basis to respond to researcher needs.