Forced migrants involved in setting the agenda and designing research to reduce impacts of complex emergencies: combining Swarm with patient and public involvement

Plain English summary The UK's National Institute for Health Research (NIHR) Health Protection Research Unit in Emergency Preparedness and Response was asked to undertake research on how to reduce the impact of complex national/international emergencies on public health. How to focus the research and decide on priority topics was challenging, given the nature of complex events. Using a type of structured brain-storming, the researchers identified the ongoing UK, European and international migration crisis as both complex and worthy of deeper research. To further focus the research, two representatives of forced migrant communities were invited to join the project team as patient and public (PPI) representatives. They attended regular project meetings, insightfully contributed to and advised on practical aspects of potential research areas. The representatives identified cultural obstacles and community needs and helped choose the final research study design, which was to interview forced migrants about their strategies to build emotional resilience and prevent mental illness. The representatives also helped design recruitment documents, and undertake recruitment and interviewer training. Abstract Background Many events with wide-ranging negative health impacts are notable for complexity: lack of predictability, non-linear feedback mechanisms and unexpected consequences. A multi-disciplinary research team was tasked with reducing the public health impacts from complex events, but without a pre-specified topic area or research design. This report describes using patient and public involvement within an adaptable but structured development process to set research objectives and aspects of implementation. Methods An agile adaptive development approach, sometimes described as swarm, was used to identify possible research areas. Swarm is meant to quickly identify strengths and weaknesses of any candidate project, to accelerate early failure before resources are invested. When aspects of the European migration crisis were identified as a potential priority topic area, two representatives of forced migrant communities were recruited to explore possible research ideas. These representatives helped set the specific research objectives and advised on aspects of implementation, still within the swarm framework for project development. Results Over ten months, many research ideas were considered by the collaborative working group in a series of six group meetings, supplemented by email contact in between. Up to four possible research ideas were scrutinised at any one meeting, with a focus on identifying practical or desirable aspects of each proposed project. Interest settled on a study to solicit original data about successful strategies that forced migrants use to adapt to life in the UK, with an emphasis on successfully promoting resilience and minimizing emotional distress. "Success in resettlement" was identified to be a more novel theme than "barriers to adaption" research. A success approach encourages participation when individuals may find discussion of mental illness stigmatising. The patient representatives helped with design of patient-facing and interview training materials, interviewer training (mock interviews), and aspects of the recruitment. Conclusion Using patient and public involvement (PPI) within an early failure development approach that itself arises from theory on complex adaptive systems, we successfully implemented a dynamic development process to determine research topic and study design. The PPI representatives were closely involved in setting research objectives and aspects of implementation.