Dr Rosamund Yu, Head of PPI and Research Communications at the NIHR biomedical research centre at University College London Hospital, outlines how cancer patients were instrumental in the successful development of a digital health toolkit

Cancer patients and their caregivers have been central contributors to a research project looking to create a digital health toolkit designed to support cancer patients undergoing treatment. The aim is to empower cancer patients by providing personalised information and support to improve their quality of life and experience of using the health service.

 A prototype of the toolkit was successfully piloted on oesophageal and gastric cancer patients with encouraging feedback from patients, carers and healthcare staff. The project has begun testing the toolkit further and expanding support to other types of cancer with additional functionality and content in response to user feedback.

Patients affected by cancer and carers have been central from the very start of the project and their role expanded and evolved as the research developed. The initial proposal was reviewed by a PPI group of cancer patients at the NIHR UCLH biomedical research centre. Some of the group members who were interested in the project went on to become core members of the research team, initially attending monthly meetings. Due to the inclusive nature of the project the PPI members’ roles were expanded to all elements of the research, including reviewing key project documents (protocol, ethics and grant applications), recruitment of participants, supervising focus groups, analysis of qualitative findings, participating in research workshops, writing content for the toolkit, and dissemination of findings.

Researchers were insistent that the patient members of the research group be considered equal and valued members of the research team.

One patient member, Elizabeth Lloyd-Dehler, is a cancer patient who had experienced a long recovery period at home and she felt this emphasis on being a valued member very strongly throughout the project: “I hugely valued the nature of the collaboration. From the project’s very beginning it was assumed my role would be an ‘active’ one in the developmental process, right up to delivery. This never faltered.”

Lead researcher and a clinical lecturer in General Practice at UCL Dr Henry Goodfellow said: “The insights the patients have brought to the project are immeasurable, they have made such a difference and significantly increased the chances of this project being successful. This is the first time I have actively involved patients in my research and I can’t imagine working on another project without them.”  

 

Editorial note:

To help you create your next patient engagement activities, use the PARADIGM tool for Community Advisory Boards* to help you plan and run community advisory boards, the Recommendations for identifying the right patients* to support your team when it’s ready to reach out to patient partners, the Legal toolkit* that will provide you with guidance on how to use the reference agreements and the Guiding Principles co-created by WECAN and partners, and finally, use the Monitoring and evaluation framework* to help you set the parameters for success from the get-go.

* All PARADIGM tools will be released during the summer of 2020. Follow the information on our website. The final names of each tool might still change.

This is the second article of the mini-series of six articles. Find the other articles from here.