"VoiceIn: enhancing patient and public involvement in research"

Context Patient and public involvement and engagement (PPIE) is at the heart of good practice in health and biomedical research, enabling research to be shaped by the communities it aims to benefit. However, traditional approaches to PPIE are not always successful and there are still many challenges, particularly for involving young people. As the key beneficiaries of future research, we need to engage young people proactively in PPIE and provide early positive experiences to keep them involved longer term. Most models of involvement have been developed by adults for adults. We want to change this by designing new accessible PPIE strategies with young people. Challenges Young people have told us about some problems with current PPIE approaches including: inconvenient timings or locations for face to face activities (e.g. workshops held at universities in the daytime); the need for long term commitment during a changing phase of their development; group activities that some young people find off-putting; not receiving feedback about research progress after they have made a contribution. Health researchers have also told us about problems working with younger contributors including: how researchers can struggle to recruit diverse PPIE contributors; not hearing about PPIE experiences on other projects; not knowing which research topics are currently important (‘trending’) for young people. To address these and related problems, and to work alongside traditional PPIE, we have co-designed, with young people and researchers, a digital platform ‘VoiceIn’. VoiceIn VoiceIn is a website and smartphone app for PPIE that we have developed with young people and health researchers over many months. The smartphone app enables young people (aged 16+) to shape the future of health research by contributing their ideas through the app. VoiceIn provides feedback about how other young people have contributed (e.g. ‘87% of people liked the project’) and gives progress updates (e.g. ‘the project has led to a policy change in cancer treatment’). Researchers use the website to upload questions for young people, monitor responses, post progress updates and target particular groups (e.g. 16-18 year olds interested in anxiety research). Aim Our overarching aim is to develop new approaches to PPIE that are directly informed by young people. Objectives Work with diverse young people and communities to make VoiceIn usable for all Test and evaluate VoiceIn by talking to people about their experiences of using it and analysing information collected automatically within the VoiceIn platform about how people engage with it Improve VoiceIn based on feedback Share learning with researchers so they can improve their PPIE Enable researchers and funders to see who has contributed to PPIE and who is missing, supporting new approaches to inclusion Develop a plan with research funders so that VoiceIn can thrive longer term Applications and Benefits We believe that VoiceIn can be used widely to support all kinds of health and biomedical research. Our approach addresses problems with PPIE that young people have told us about in a way that has been developed in partnership with young people. This project will help ensure that all young people can take up PPIE opportunities if they wish to do so, encouraging them to engage with research longer term.