“Patient and Public Involvement (PPI) can often be something bolted on to research in a way that fits with the existing research plan. This makes research much easier to press ahead with, as the conflicting and changing opinions of the public do not need to change the planned course of progression. Unusual then, that PPI was considered to be an integral part of Power Up, and awarded time, resources, and influence. The young people who were involved have made great use of this newfound power. The Power Up app is fantastically tailored to the target audience because the target audience made it. The novel approach to PPI used in the project was important in hearing and using the young people’s views…I would urge future researchers to consider PPI as a vital part of research proceedings, as it has been in Power Up.” Project worker, Power Up
The Power Up study, supported by NIHR CLAHRC North Thames, has made the involvement of young people an integral part of the research process in work to develop an app to support shared decision-making in mental health. Power Up is a four-year research project to develop an app for young people to use from their first assessment with Child and Adolescent Mental Health Services (CAMHS) to empower them to be actively involved in decision-making.
Young people were active participants in taking the concept of a shared decision-making tool through design, prototype, and testing through three different types of involvement: governance of the project; needs and environment analysis; and detailed input for the development of the intervention.
PPI was embedded into the project model from the outset, to be iterative and cyclical informing the development and direction of the digital tool at each stage. Involving service users resulted in the identification and implementation of multiple changes to the app, both conceptual and tangible. Several challenges associated with PPI were also encountered, warranting future research and discussion.
The team has published their involvement experience in a paper published in special themed edition of the Journal of Health Design entitled Patients as co-designers to improve the quality of care
Edridge C L, Edbrooke-Childs J, Martin K, Delane L, Averill P, Feltham A, Rees J, Jeremy G, Chapman L, Craven M P, Wolpert M.
Power Up: Patient and public involvement in developing a shared decision-making app for mental health.
JHD. 2018;3(1):63–74. https://doi.org/10.21853/JHD.2018.40