ARU researchers have developed a series of brief practical guides for research ethics committees (RECs) asked to review applications involving inclusion health groups.
After being commissioned to undertake an initial piece of research in 2023-34 which focussed on ways of enhancing refugee and asylum seekers’ (R/AS) participation in health research, the health inclusion research team were asked to undertake a larger project to develop practical guides in this area.
An unexpected finding of the previous study was that academic and clinical researchers frequently identified RECs as unintentionally creating barriers to research participation for R/AS populations. This project responds to recommendations arising from these findings, and additionally provides guidance pertaining to other groups where RECs may have significant concerns over their involvement in research due to concerns about vulnerability.
RECs typically take an understandably cautious approach to research involving underserved populations or individuals perceived of as being especially vulnerable by dint of their status or personal characteristics.
As our previous project on refugee and asylum seeking populations’ research participation found, however, some of the safeguards required by RECs could increase barriers to participation by diverse individuals and groups who would potentially be interested in engaging with research (with appropriate support and safeguards put in place for their protection).
For example, RECs were found in some cases to require multiple levels of permissions and safeguarding, which participants felt was intrusive or unnecessary; made presumptions about populations based on limited understanding of the community in question or their circumstances; or could delay research applications through repeated requests for additional information until a willing cohort of participants had been dispersed to asylum accommodation in varying localities, despite potential participants, community partners and service providers supporting or co-producing the application with academic researchers.
In response to these findings, the team were invited by CPICB to engage with this challenge, as well as expand guidance in relation to other inclusion health populations where it had been identified that RECs had inadvertently caused delays or abandonment of research by placing increasingly onerous requirements on research teams.
The commissioned suite of guidance – four short specialist guides and an overarching set of recommendations – are anticipated to be the first stage of work in this area of activity, given the enthusiasm with which the drafts have been greeted by reviewers, ICBs, and researchers. Other guides and training materials are anticipated to follow on from this initial set of publications.