Improving Research Inclusion: learning from NIHR and Research Council funded studies in England

Research Inclusion (RI) seeks to improve the inclusion of marginalised groups with significant health care needs in research. Research programmes are known to under-recruit those with multiple health problems, facing health inequalities, and living in precarious social situations where their identity can be a source of stigma and discrimination 1 . RI strategies are likely to vary by the health conditions under scrutiny, research designs, the type and timing of data collection, venues for data collection, and the nature and complexity of interventions. There is little practical information for researchers on how do to this. In this paper, we set out a synthesis of lessons learnt from a range of research programmes in England. These include studies of adolescents living with adverse childhood experiences in complex intersectional positions of vulnerability; studies of ethnicity and multimorbidity including psychosis; and research to improve public and patient involvement with ultra marginalised adolescents. The research projects sought to ensure representation and participation by people with lived experience, and from the most marginalised groups facing multiple forms of vulnerability. We conclude that inclusion strategies must evolve within the research programmes; balance power and improve trust through co-design and participatory methods; build community partnerships and networks of trusted organisations before during and after the research; adapt research infrastructures that may act as barriers, alongside ensuring culturally responsive designs to tackle epistemic injustices, and secure necessary resources 2 . Research studies should be explicit on which marginalised groups they aim to recruit, anticipate flexibility to involve other unknown complex groups, set out procedures for participation and retention, reporting successes and failures, and generate recommendations for future studies. We place our learning in the context of published literature and propose a research inclusion checklist for future refinement.