Methods to engage "under-served" people with chronic disease in contributing to research: A scoping review and stakeholder prioritisation

BackgroundPeople with lived experience of chronic illness have much to contribute to all stages of research from design to dissemination. However, not everyone is able to engage in research, with low representation from under-served groups. People from these groups use their lived experience to provide a different perspective compared to people that traditionally engage with research. The aim of this scoping review is to identify and evaluate the current evidence on engaging under-served populations with chronic disease in research. MethodsA scoping review was conducted in accordance with PRISMAScR guidance. Two databases of peer-reviewed literature (Scopus and Web of Science), grey literature and websites were searched from 2009 to present. We included any study type that used at least one intervention to engage people with chronic illness from an under-served group in research. ResultsFive studies reporting ten methods of engagement were included. The most frequently described method (n=4) was ensuring accessibility to research studies (e.g. location, transportation, timing). Three studies tested the provision of financial incentives. Other methods described included ensuring cultural sensitivity and using peers to support participants. The methods of engagement identified in this scoping review were discussed by stakeholders from relevant community organisations and patient representatives, which informed the interpretation of data. ConclusionsFew methods of engagement of under-served people in research have been tested. Many factors contribute to the underrepresentation of minorities in clinical research. Constant assessment to improve efficiency in identifying, enrolling, and engaging minorities in clinical research is important.