Project aims:
To develop and to test processes and guidance to better involve patients and their families in serious incident investigations. Find out more about what we did and what we developed here: https://learn-together.org.uk/
What you told us:
Patient and family involvement in the study began prior to funding. Two of the study team met with a family representative whose shared experience shaped future priorities of a national investigatory body, in relation to patient and family involvement in investigations. This person became our lay co-applicant and helped shape the original application. During the application stage the research team also consulted with two lay leaders and two patient safety panels who fundamentally agreed on the importance of the study.
Finally, as part of the application, four patient and family representatives agreed to be the founding members of a Patient and Family Advisory Group. Discussions with this group were instrumental in shaping the study focus and design. Indeed, the decision to use remote (virtual) methods for convening the group was shaped through these early conversations, as they felt that people affected by incidents might come from anywhere across England and may well have physical or psychological disabilities resulting from their harm, and so asking them to attend meetings locally would potentially limit involvement. This approach was felt to be quite unusual at the time of the application (although it has become the norm during the pandemic). On commencement of the study the Patient and Family Advisory Group was expanded. This process was led by the group themselves, with the research team providing administrative support. Find out more about who became involved here: https://learn-together.org.uk/investigation-resources/our-people/
What we did next:
This work has been supported from conception of the idea, through to analysis and dissemination, by a dedicated, engaged and passionate Patient and Family Advisory Group. The role of this group was varied, and meaningful. They had a wide range of roles, but these can perhaps be summarised as being the ‘north star’ of the research team, helping us to come back always to why, and for whom, this research is being done. In addition to providing a consistent, supportive foundation for the research, they also challenged our thinking at critical points, and we can specifically point to changes that were made because of their input – for example, early indications that organisational learning should not be the only outcome of interest. Their activities included sharing their own experiences, advising on the development of protocols and recruitment materials, collaborating in data, co-designing and iterating the guidance, and providing reflections on challenges within the research process. We genuinely believe that without their involvement, the Learn Together programme would not have been as successful or impactful as it has.