Related Experiment Video
Updated: Feb 22, 2026

Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Service Users perspectives in PROMISE and research
1Cambridgeshire and Peterborough NHS Foundation Trust, Cambridge, UK, sarah.rae@rockyroad.org.uk.
Abstract:
Since its inception in 2013, PROMISE (PROactive Management of Integrated Services and Environments) has been supporting service users and staff at the Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) on a journey to reduce reliance on force. The author's own personal experiences led to the founding of PROMISE and illustrates how individual experiences can influence a patient to lead change. Coproduction is actively embedded in PROMISE. Patients have been meaningfully involved because they are innovators and problem solvers who bring an alternative viewpoint by the very nature of their condition. A patient is more than just a person who needs to be 'fixed' they are individuals with untapped skills and added insight. There have been 2 separate Patient Advisory Groups (PAGs) since the project was first established. The first Patient Advisory Group was recruited to work with the PROMISE researchers on a study which used a participatory qualitative approach. Drawing on their lived experience and different perspectives the PAG was instrumental in shaping the qualitative study, including the research questions. Their active involvement helped to ensure that that the study was sensitively designed, methodologically robust and ethically sound. The 2nd PAG was formed in 2016 to give the project an overall steer. Patients in this group contributed to the work on the 'No' Audit and reviewed several CPFT policies such as the Seclusion and Segregation policy which has impacted on frontline practice. They also made a significant contribution to the study design for a funding application that was submitted by the PROMISE team to the National Institute for Health Research (NIHR). Both PAGs were supported by funding from East of England Collaboration for Leadership in Applied Health Research and Care (CLAHRC EoE) and were influential in different ways. An evaluation of the 2nd PAG which was conducted in June 2017 showed very high satisfaction levels. The free text comments also revealed how many of the patients valued their involvement and were glad to have worked alongside the PROMISE team. The impact of this PAG has been recognised by CPFT who have agreed to support the group financially and are keen to widen its remit to ensure that more patients are actively involved in Trust activities.
Related Concept Videos
Persuasion Strategies
Patient-centered Care
Humanistic Psychology
This approach...
Ethical Issues
Ethical Concerns in Healthcare:
Ethics in Research
Social Proof

