Building a Pathway to Participation - final Report

This activity was funded through the ICS Research Engagement Network (REN) development programme. The views expressed in this publication are those of the author(s) and not necessarily those of NHS England or the Department of Health and Social Care. PAGE 2 Acknowledgements The research team would like to thank all the community organisations and the health and social care professionals who gave their valuable time and input to this project. We were very fortunate to have an expert steering group who provided insightful oversight, many of whom have lived experience of being a refugee or asylum seeker. Accordingly, we wish to thank Dr Samson Tsegay, Professor Eleonore Kofman, Professor Sanjiv Ahluwalia, Donna Coe, Shingirayi Kandi, Alaa Alsayed Ahmad, Dr Anna Markovska and Dr Iryna Soldatenko. We are grateful to all the people within the community and health sectors, as well as ARU colleagues and students, who disseminated information about this study and highlighted the opportunities to take part within their networks. This encouraged active participation from a broad range of committed stakeholders. This project is funded by NHS England and the Department of Health and Social Care (DHSC) through Cohort 3 of their Integrated Care System (ICS) Research Engagement Network programme. It is supported by the Cambridgeshire and Peterborough Integrated Care Board Research Office via the Head of Research Dr Philippa Brice; Gill Searl and Farsh Raoufi from the Strategic Migration Partnership at the East of England Local Government Association; the British Red Cross; and the Cambridge Refugee Resettlement Campaign Trustees, Adrian Matthews and Catharine Walson and their colleagues. We would also like to express our gratitude to the MA Graphic arts students (Gabriel Arreaza Mendes, Yaxi Lu, Donglin Song, Xuerui Chen and Mel Byard), Dr Nanette Hoogslag Course Leader MA Illustration, Cambridge School of Art, ARU, and professional live-scriber Beatrice Baumgartner-Cohen who worked with the students as they captured the activities of the final stakeholder event. The students also illustrated the images which appear throughout this report. Acknowledgements Note on Terminology It should be noted that the terms “refugees” and “asylum seekers” used throughout the report do not cover the full range of migrants. For example, those on the various Ukrainian schemes are referred to as “guests” and Hong Kongers are generally referred to as “BN(O) visa holders”. This report however includes both groups of recent migrants since all these people – and others – experience forced migration. We also recognise that people may find the terms refugee and asylum seeker dehumanising and have tried where possible to use the terms ‘a person seeking asylum’ or ‘a person with refugee’ status, however in some instances we have needed to adopt ‘refugee’ and ‘asylum seeker’ to mirror the wording in existing law, policy, and statute. Executive Summary This consultation programme sought to understand the barriers faced by refugees and asylum to participating in health research, and in parallel, the barriers encountered by health professionals in aiming to engage with these groups. Project activities and proposed solutions were codesigned throughout with people with lived experience. Refugee and asylum seeker involvement in health research is significantly limited by negative experiences of accessing health services together with lack of understanding of the NHS system. These key factors are exacerbated by experiences of trauma, little trust in the state and authority figures, difficult asylum processes and scarce community / peer support. Our findings revealed that refugees and asylum seekers are disadvantaged in multiple respects which feed into the absence of opportunity and capacity to engage with health research. The ability of health and social care professionals to engage with refugee and asylum seekers effectively is curtailed by their view that they do not possess sufficient understanding of these populations, that there is limited opportunity for long-term relationships with support organisations, concerns over gaining informed consent and lack of appropriate support for research participants. Despite the widespread desire to include refugees and asylum seekers in health research, the barriers encountered are such that the logistical and practical issues described by health professionals have so far been significant obstacles to their inclusion. This work highlights the complex nature of the barriers to involving refugees and asylum seekers in health research. Collective dialogue facilitated as part of this process between researchers and refugees and asylum seekers has identified workable solutions to positively tackle the identified barriers. The co-designed solutions and recommendations for future action aim to ensure that this hitherto marginalised group within health research will have future opportunities for meaningful engagement and active participation. Recommendations for policy - develop local mechanisms to feed into ICB and ICS work to ensure representation of refugees and asylum seekers. Recommendations for health professionals – cultural awareness training, use of interpreters, materials and guidance developed with refugees and asylum seekers, guidance for ethics committees, simplified and appropriate routes to engagement. Recommendations for community members and civil society agencies – peer research training, opportunities for participation in ICS processes, expand existing training on the NHS system and health research, create opportunities for regular engagement between health professionals and refugees and asylum seekers, reverse mentoring relationships and the creation of networking events. Table of Contents Acknowledgements......................................................................................................................... 3 Executive Summary ......................................................................................................................... 4 Section One: Introduction ............................................................................................................... 7 1.1 Project Governance ............................................................................................................... 8 Section Two: Methodology ............................................................................................................. 9 2.1 Scoping Review.................................................................................................................... 10 2.2 Project Activities .................................................................................................................. 23 2.2.1 Community Workshops .................................................................................................... 26 2.2.2 Health Professional Workshops ....................................................................................... 26 2.2.3 Final Stakeholder Event .................................................................................................... 28 2.3 Analysis ................................................................................................................................ 29 Section Three: Findings ................................................................................................................. 30 3.1 Community Identified Barriers ........................................................................................... 31 3.1.1 Fear ................................................................................................................................... 31 3.1.2 Trust and Trauma ............................................................................................................. 33 3.1.3 Lack of Knowledge about the UK Health System ............................................................. 34 3.1.4 Gatekeepers ..................................................................................................................... 35 3.1.5 Lack of Knowledge about Research ................................................................................. 35 3.1.6 Lack of Time and Competing Priorities ............................................................................ 37 3.1.7 Practical Barriers and Dispersal........................................................................................ 38 3.1.8 Communication Barriers and Language ........................................................................... 40 3.1.9 Lack of cultural understanding among health professionals ........................................... 42 3.2 Health and Social Care Professionals’ Identified Barriers ................................................... 43 3.2.1 Lack of Trust ..................................................................................................................... 44 3.2.2 Researcher’s Lack of Cultural Awareness and Training ................................................... 46 3.2.3 Practical Barriers Faced by Communities and Health Professionals ................................ 47 3.2.4 Communication and Language Barriers ........................................................................... 49 3.3 Solutions .............................................................................................................................. 51 3.3.1 Solutions for Building Trust .............................................................................................. 52 3.3.2 Solutions for Increasing Health Professional Cultural Awareness ................................... 58 PAGE 5 3.3.3 Solutions for Practical Issues ............................................................................................ 60 3.3.4 Solutions for Language and Communication Barriers ..................................................... 62 Section 4: Conclusion .................................................................................................................... 64 Section Five: Recommendations ................................................................................................... 66 Reference List................................................................................................................................ 72 Appendices .................................................................................................................................... 76 PAGE 6 Section One: Introduction This report presents the findings from a suite of consultation activities funded jointly by NHS England and the Department of Health and Social Care (DHSC) under Cohort 3 of the Integrated Care System Research Engagement Network (REN) development programme. The overarching aim of the REN programme is to increase the numbers of people participating in research, to ensure that the diversity of people taking part will ensure that research is more representative of our diverse populations, and that communities are more actively involved in shaping the future of local health and care. This project was co-designed with community partners to understand the two-way systemic barrier to research participation by refugees, asylum seekers and other forcibly displaced persons (including Hong Kongers present in the UK on British National Overseas visas) and that of health and care professionals and researchers. Our aim was to identify the barriers to research participation, faced by the diverse refugee and asylum-seeking communities in the Cambridgeshire and Peterborough Integrated Care System area, and potential solutions to these, as well as exploring the experiences of health professionals and researchers who are seeking to undertake research in collaboration with the populations. The project culminated in the identification and scoping of proposed solutions with all stakeholders to form part of an action plan that has the potential to be rolled out in future. The consultation programme was designed to capture the lived experience of individuals with refugee status and people seeking asylum, of which a key dimension is their interactions with the UK health system and how this influences their ability and capacity to participate in health research. It also sought to engage health and care professionals who have experience of working with refugee and asylum-seeking populations and those who may wish to do so in future, to understand their concerns and constraints. The research questions set out to explore: • How do individuals with refugee status and people seeking asylum/forcibly displaced persons, perceive healthcare in the UK and health and care research? • What are the barriers that inhibit individuals with refugee status and people seeking asylum from participating in health and care research? • How do health and care professional perceive individuals with refugee status and people seeking asylum? How far does their knowledge of barriers, legal settlement status impacts, communities and cultural competence extend? • What are the barriers that health and care professionals encounter in aiming to engage individuals with refugee status and people seeking asylum in health research? • Where and how should under-served communities or ‘hard to reach’ groups be identified and approached? By addressing these questions, our aspiration is that the views and experiences of all stakeholders are fully represented. Incorporating feedback from partners to devise solutions and priorities for the action plan has provided a platform from which to operationalise these recommendations and allowed stakeholders to work together to identify mechanisms to support the involvement of these underserved populations within health research. The project team was formed of a multi-agency collaboration of ARU research staff, Cambridgeshire and Peterborough Integrated Care Board (CPICB) representatives, civil society organisations supporting refugees and asylum seekers, the Strategic Migration Partnership at the East of England Local Government Association (EELGA SMP) (Local Government Agency), Cambridge Refugee Resettlement Campaign, British Red Cross, people with lived experience as refugees or asylum seekers, and health and care professionals in Cambridgeshire and Peterborough. Working in close collaboration with community organisations also facilitated the involvement of much smaller and informal support groups to bring forward the voices of refugees and asylum seekers throughout this process. 1.1 Project Governance The project benefited from a steering group to guide and provide strategic oversight throughout. The group was made up of eight individuals with significant expertise in matters related to refugees and asylum seekers from either personal or professional experience. Five are academics, four members of the group hold refugee status/or have refugee heritage/are Ukrainian guests in the UK; one is a world-renowned expert on refugees and migrant experiences, and one member PAGE 8 is an NHS academic/clinical practitioner who is also a Trustee of a refugee support charity. The steering group met monthly, in total on five occasions to provide guidance to, and oversight of, the project. Project plans, workshop format, materials and all other aspects of the project direction, review of findings and action plan have been provided with strategic oversight and practical input by the steering group. Section Two: Methodology The project was guided throughout by a co-production approach (Beebeejaun et al, 2014; Red Cross et al /AVAIL report, 2022). Working collaboratively with project partners - the Strategic Migration Partnership at the East of England Local Government Association (EELGA SMP), British Red Cross (BRC) and Cambridge Refugee Resettlement Campaign (CRRC) - all aspects of the project design were collaboratively planned to ensure that the opportunities were maximised to hear from the relevant stakeholder groups involved. Therefore, it was collectively decided that offering both different locations across the ICS as well as online opportunities to participate would facilitate the greatest and most equitable attendance from diverse participants. Publicity and information about the project were shared through community networks by community partners (EELGA SMP /CRRC and BRC) whilst REN and CPICB colleagues supported the dissemination of information relating to project activities through health and clinical research networks. The call for evidence (Appendix A) was sent out through the National Institute for Health Research, the Faculty of Homeless and Inclusion Health/Pathway and Queen’s Nursing Institute professional networks as well as other REN projects in the study area. Anglia Ruskin University colleagues also publicised the project and call for evidence through their extensive health and social care network of partners. Project participants were recruited through active outreach undertaken by all project team agencies, supplemented by follow-up and snowballing of contacts, throughout the course of the project. The timeframe for the design and implementation of the project was relatively short. Funding was confirmed by NHS England in late October 2023 with a completion date for all activities of PAGE 9 31st of March 2024 and submission of the final report and required action plan in April 2024. Given the short timeframe to complete activities, it was recognised from the outset that this was too short a period to meaningfully obtain ethical approval from the university to carry out research directly with people with refugee status and individuals seeking asylum themselves. A strategic decision was therefore taken to bring forward the voices of these groups by consulting with community representatives who work directly with them through the provision of frontline services. It is therefore critically important that further activities if funded in a subsequent phase of research activity should ensure that there is a long enough lead-time to permit obtaining ethical approval to engage and work directly with refugees and asylum seekers and other protected categories of people. 2.1 Scoping Review An initial scoping review was carried out to identify existing research which has sought to capture refugee and asylum seeker involvement in health research or projects which have aimed to support such engagement. This review looked at local evidence with reference to the Cambridgeshire and Peterborough ICS area and the national picture. It is discussed here as a precursor to introducing the data producing activities undertaken within the project. Context At the end of 2022, UNHCR UK data calculated that 108.4 million people worldwide were forcibly displaced, an increase of 19.08 million from 2021, and almost double the number from a decade ago (59.21 million - 2014). This dramatic rise in displacement has meant that, as of November 2022 (UNHCR, 2023), there were 231,597 refugees, 127,421 pending asylum cases, and 5,483 stateless persons in the UK (Figure 1). PAGE 10 231,597 refugees Total numbers 127,421 pending asylum cases 5,483 stateless persons Number of refugees resettled through to the UK via the Mandate Scheme, UKRS, Community 1,101 resettled through the UK Resettlement scheme 4 arrivals under Pathway 2 of the ACRS Sponsorship Scheme, and the ACRS 6 under the Mandate Protection Programme 280 under the Community Sponsorship Programme Total number granted protection through 1391 resettlement schemes year ending Sept 2022 Fig 1: Data available on total number of refugees, pending asylum cases, stateless persons, as well as the number of refugees resettled through to the UK as of November 2022 via the available resettlement schemes - the Mandate Scheme, the UK Resettlement Scheme (UKRS) Community Sponsorship Scheme and the Afghan Citizens Resettlement Scheme (ACRS). Data made available by UNHCR, 2023. Individuals navigating the asylum system have traditionally been housed in asylum support accommodation in the Midlands and North of England (Walsh, 2022), however in recent years there has been a significant increase in the number of new arrivals placed in contingency accommodation in the East of England1 (see Figures 1 and 2). Individuals are now routinely housed in so-called ‘contingency’ accommodation centres in the region, these can include hotels and former military barracks which are used to accommodate people receiving section 98 support2 and people who arrived after the introduction of the Illegal Migration Bill in July 2023. Additionally, the region has seen new arrivals from Afghanistan under the resettlement scheme and from Ukraine under two visa initiatives3. This is in addition to people residing in longer-term 1 The East of England is one of the nine official regions of England in the United Kingdom. This region was created in 1994 and was adopted for statistics purposes from 1999. It includes the ceremonial counties of Bedfordshire, Cambridgeshire, Essex, Hertfordshire, Norfolk, and Suffolk. 2 As per Immigration and Asylum Act (IAA) 1999 S98. Section 98 emergency support for those who appear to be destitute and who are awaiting a decision on their application for Section 95 asylum support. 3 Those who were granted permission under the Ukrainian Family Scheme can live, work and study in the UK and access public funds for up to 3 years; The Homes for Ukraine scheme allows individuals in the UK to sponsor a named Ukrainian national or family to come to live in the UK with them, providing they have suitable accommodation to offer. PAGE 11 Section 95 accommodation4. The table below depicting the number of individuals receiving Section 95 support in the East of England illustrates the sudden dramatic increase of dispersal accommodation located in the region. Date 31/12/16 31/12/17 31/12/18 31/12/19 31/12/20 31/12/21 31/12/22 East of 597 702 864 866 1,159 1,832 6,259 England Fig 2: UK Government Dataset, Section 95 Support per geographical region 5 The changing demographics in the region require existing services to adapt so that they can serve the new populations, and the expansion of grass roots civil society organisations in response to the needs of new asylum seeking and refugee communities. It also means a shift in patient demographics within GP surgeries and primary care services in the region. As a result, organisations have begun the process of researching and reflecting on the needs of refugees and asylum seekers in their areas. Despite a desire to create better healthcare access and outcomes for refugees and asylum seekers, there has been little work which directly explores how the communities’ themselves can engage in this process or identification of the barriers which prevent the communities engaging in health and social care research. Local Demographics NHS Cambridgeshire & Peterborough Integrated Care Board (ICB) is the statutory NHS organisation responsible for ensuring health and care services meet local population needs. The area is home to almost 950,000 people who live in diverse communities from urban centres such as Peterborough to rural Fenland in the North down to Cambridge and Royston in the South (Cambridgeshire & Peterborough Integrated Care System, 2024). As part of its statutory remit, the ICB is responsible for developing a plan for meeting the health needs of the population, 4 As per Immigration and Asylum Act (IAA) 1999 S95. Section 95 supports those who have made an asylum claim and do not yet have a decision on their case. 5 section-95-support-local-authority-datasets-mar-2023.xlsx (live.com) - The only data available on where asylum seekers live in the UK is for those on Section 4 (refused asylum seekers) or Section 95 support not Section 98. PAGE 12 managing the NHS budget, and arranging for the provision of health and care services in a geographical area. A key aspect of this work is engagement with local populations, including those from “inclusion health” communities 6. Fig 3: Map of the NHS Cambridgeshire & Peterborough Integrated Care System. Image from Cambridgeshire & Peterborough Integrated Care Board: Howard and Kearney, Introducing the ICS & Integrated Neighborhood Team, 2022, p.3. Figure 4 (below) depicts the diverse demographics of the individuals settled in each area, highlighting the non-homogeneous nature of the populations within the ICS, with status relevant to this research. Data provided by the Strategic Migration Partnership at the East of England Local Government Association, as of December 2023. Typically, inclusion health groups include refugees and asylum seekers, those experiencing homelessness or substance misuse, prisoners, sex workers, and those from Roma or traveller communities. 6 PAGE 13 Status/scheme Location Resettled refugees VPRS VCRS UKRS Community sponsorship ARAP/ Homes Asylum UASC - Estimate for seekers preferred for Hong term is Kongers now (BNO) Ukraine ACRS "separated children" Cambridge City 24 70 6 13 59 582 0 N/A N/A Cambridgeshire N/A N/A N/A N/A 183 2355 N/A 88 N/A Peterborough 74 0 20 0 102 394 454 44 N/A Fenland 10 0 0 0 N/A 168 0 N/A N/A East 0 0 0 0 N/A 286 0 N/A N/A Huntingdonshire 5 0 0 8 48 431 12 N/A N/A South 10 5 0 0 58 888 221 N/A N/A N/A N/A N/A N/A N/A N/A N/A 132 2166 Cambridgeshire Cambridgeshire Estimate for whole of Cambridgeshire incl. Peterborough Fig 4: Individuals in the Cambridge and Peterborough area. Data provided by the Strategic Migration Partnership at the East of England Local Government Association, as of December 2023. Note that these figures are subject to change rapidly. VCRS - Vulnerable Childrens Resettlement Scheme (ran at the same time as the Syrian scheme but for families and some lone refugees from other locations such as Sudan & Iraq) VPRS - Vulnerable Persons Resettlement Scheme (Syrian) UKRS - United Kingdom Resettlement Scheme (Replaced VPRS & VCRS, people from a number of countries) Community sponsorship = community groups resettling families separately from schemes managed by a local authority ARAP/ACRS – Afghan Relocations and Assistance Policy (opened on 1 Apil 2021) and Afghan Citizens Resettlement Scheme (opened on 6th January 2022) UASC – unaccompanied asylum-seeking children The following section will explore the populations within our two study areas, Peterborough and Cambridge, in greater detail. PAGE 14 Peterborough Demographics Whilst more general data is captured at national level (Home Office, 2019, 2023), detailed information relating to local areas is more commonly captured by civil society organisations and local service providers working at ground level. The British Red Cross, which supports refugees, asylum seekers and migrants in Peterborough, have captured the demographics of the individuals who use their service. Of the 1433 people the Red Cross supported from 2020 to January 2024, of those who provided information on their gender, males represented the majority of their service users (77%) compared to females (20%). 44% of people were asylum seekers and 21% of individuals have refugee status. The most common nationalities supported were Iranian (17%), Iraqi (14%) and Afghan (13%), followed by Sudanese (9%) and Syrians and Eritreans (7%). 47% of the individuals using the service were between the ages of 25 and 45 (data provided by the British Red Cross, Refugee Support Peterborough Service User Demographics 2020-January 2024). This is somewhat reflective of the national picture where in 2023, the most common nationality of asylum seekers was Albanian followed by Afghan. In previous recent years, Syrian and Iranian were the most common nationalities (Sturge, 2024) and of the 97,390 people who applied for asylum in the year ending June 2023, 60% were adult males aged 18 to 49 (Home Office, 2023). The Home Office data shows that at the end of 2023, 454 asylum seekers in Peterborough were receiving support from the Local Authority (Home Office, 2019). There are approximately 330 Home Office bed spaces for dispersed asylum seekers in Peterborough, with around, a further 130 contingency hotel spaces in Peterborough, a number which will be reduced to roughly sixty contingency hotel spaces due to the closing of a hotel (British Red Cross, data covering until middle of January 2024). The increase of Section 98 accommodation in the region has resulted in a court case brought by Fenland District Council7 which challenged the use of hotels for asylum accommodation on the grounds that the remote location of Wisbech would place people at risk due to a lack of support services and amenities coupled with a high chance of labour exploitation. 7 Fenland DC v CBPRP Ltd (2) Serco Ltd (3) H&H North Ltd [2022] EWHC 3132 (KB) PAGE 15 This case highlighted the challenges of supporting new populations in areas which have not traditionally been used to house asylum seeking and refugee communities and the reluctance of some local authorities and private landlords to house them in their area. In addition to individuals housed by the Home Office in Section 95 and Section 98 dispersal accommodation, a number of individuals have arrived in Peterborough under various Government settlement schemes (See Figure 6 below). Cambridgeshire Demographics Whilst Government data records the numbers of refugees and asylum seekers in Cambridge more generally, there is a lack of local research regarding demographics in the area. In 2016, Cambridge Ethnic Community Forum was commissioned by Cambridge City Council to conduct a piece of research on asylum seekers and refugees currently residing in Cambridge. This research was jointly commissioned on behalf of Cambridge City of Sanctuary (CECF, 2016). However, to date there is no updated information regarding nationalities, population size or gender. At the end of 2022, there were six asylum seekers receiving support from the Local Authority in Cambridge and two in East Cambridge, significantly less than in Peterborough. Cambridgeshire has received a significant number of Hongkonger and Ukrainian individuals. The British Future’s (Rolfe and Benson, 2023) report (funded by DLUHC) which surveyed more than two thousand Hongkongers, stated that 1.6% have settled in Cambridgeshire. Data provided by the Regional Hong Kong Welcome Hub, East of England Local Government Association SMP (November 2023) showed an estimated number of 1596 Hongkongers in Cambridgeshire and a minimal number in Peterborough. The table below depicts the number of individuals in each area who have arrived under various Government settlement schemes. PAGE 16 Location Homes for Afghan Ukraine (arrivals) Resettlement Supported Asylum All 3 pathways (total) (population) Programme (population) England - East of 12262 1609 7583 21454 England Local authority Cambridge 574 59 0 633 Peterborough 382 145 454 981 England - total 105375 15491 95205 216071 United Kingdom - total 140563 25042 111132 276737 National picture Fig 5: Immigration groups, by Region and Devolved Administration, as of 31 December 2023 by location, including the East of England, Cambridgeshire, and Peterborough. Data available from Home Office and Department for Levelling Up, Housing and Communities, 2024. Although Peterborough is also home to 382 Ukrainians, it also houses more people from Afghanistan, Iran, and Iraq under the various resettlement and asylum-seeking schemes. These demographics demonstrate that refugee and asylum-seeking communities in the region are not a homogeneous group and that they comprise diverse individuals from different countries who will face different barriers to accessing healthcare and participating in health research determined by their own personal lived experience. Existing Healthcare Research in the Region Efforts in researching refugee and asylum seeker access to healthcare strive to dismantle barriers and enhance equitable access to vital medical services, ensuring the well-being of these diverse communities. In 2021, the Refugee Council published a report which identified the main barriers to refugee access to healthcare in the UK. The barriers were cited as being “complex and intertwined” and included issues such as lack of knowledge of the NHS, accommodation issues, existing health conditions, digital exclusion, the impact of past experiences and concerns about information sharing (Refugee Council, 2021, p. 3-5). Whilst there is a plethora of rich and diverse PAGE 17 research at national level8 and initiatives such as Doctors of the World’s Safe Surgeries scheme (Doctors of the World, 2024) there is less local research which directly addresses refugee and asylum seeker access to healthcare in the ICS area. Whilst full analysis of literature about the barriers to refugee and asylum seeker access to healthcare is outside of the scope of this report, the next section will highlight relevant research which has taken place in the local ICS area. Cambridge Refugee Resettlement Campaign (CRRC)’s 2023 report investigated local access to NHS dental care for families with refugee status living in Cambridgeshire. The report revealed that of the nineteen families interviewed, those who arrived in the UK before the end of 2019 were assisted by their Local Authority caseworker to register with an NHS dental practice. However, those who arrived after 2019 were not able to register, despite the help of their local authority caseworker. The report highlighted that successful registration did not ensure dental care access. Barriers identified included an insufficient number of appointments, overwhelmed emergency services, the high cost of some services and insufficient foreign language support and interpretation/translation services. Furthermore, a need for additional support navigating automated phone systems and arranging transportation was also identified (p.5 -7). In 2017, the Joint Strategic Needs Assessment for Cambridgeshire, developed in partnership with a range of local stakeholders across health and social care in Peterborough and Cambridgeshire, highlighted how mental distress had higher prevalence among individuals with refugee status compared with UK citizens, citing intersectional factors such as gender, age, levels of social support and experiences of trauma were key risk factors (Cambridgeshire County Council, 2017). This report also drew attention to the evidence of unmet mental healthcare needs among See for example: Kang, C., Tomkow, L. and Farrington, R., 2019. Access to primary health care for asylum seekers and refugees: a qualitative study of service user experiences in the UK. British Journal of General Practice, 69(685), pp.e537-e545; Asif, Z. and Kienzler, H., 2022. Structural barriers to refugee, asylum seeker and undocumented migrant healthcare access. Perceptions of Doctors of the World caseworkers in the UK. SSM-Mental Health, 2, p.100088; Tomkow, L.J., Kang, C.P., Farrington, R.L., Wiggans, R.E., Wilson, R.J., Pushkar, P., Tickell-Painter, M.C., Lee, A.R., Whitehouse, E.R., Mahmood, N.G. and Lawton, K.M., 2020. Healthcare access for asylum seekers and refugees in England: a mixed methods study exploring service users’ and health care professionals’ awareness. European Journal of Public Health, 30(3), pp.527-532; Scott, R., Forde, E. and Wedderburn, C., 2022. Refugee, migrant and asylum seekers’ experience of accessing and receiving primary healthcare in a UK city of sanctuary. Journal of Immigrant and Minority Health, 24(1), pp.304-307. 8 PAGE 18 children and young people with refugee status, specifically amongst those who were separated children and who were exposed to violence. The diagram below summarises the key findings. Fig 6: Factors contributing to poor mental health among refugee and asylum seeker populations. Adapted from Cambridgeshire County Council, 2017, and Cambridgeshire and Peterborough Insight, 2024. Image created using Canva, 2024. Outside the ICS area, but located in the East of England, Dr Emily Clark (GP) and her team in Norfolk have carried out a series of research and community engagement health research events. These events had the purpose of introducing communities to the concept of health research and also of gaining insights into the obstacles that prevent their involvement in research. Clark et al.’s (2022a) work has highlighted that language and administrative barriers are key issues to receiving good quality primary care and Clark et al (2022 b) have shown that healthcare needs are frequently unmet within primary care settings. Overall, this work speaks to the need to build trust and for meaningful, non-project-specific relationships between institutions and communities that meets the Community-Based Participatory Research (CBPR) principles of using collaborative and equitable patient-centred, community-driven research approaches (Wallerstein et al., 2018; Collins, et al., 2018). The work of Clark et al. (2022a) and Clark et al. (2022b) are insightful examples of CBPR and good practice, highlighting that partnerships between institutions and communities need to comply with CBPR principles and be collaborative PAGE 19 in nature, recognising “the community as a social entity with a unique identity and contributions” (Burke et al., 2013). Including Community Voices in Health Research Despite a plethora of academic work which addresses access to healthcare for individuals with refugee status and for people seeking asylum, there is a lack of work which directly explores the inclusion of the communities themselves in the co-creation and participation of health and social care research. Of the projects which explore asylum seeker and refugee access to healthcare in the region, one was created in partnership with local stakeholders (JSNA, 2016), and one other directly involved individuals with lived experience (refugee families) at local level (CRRC, 2023). The lack of inclusion of community voices is reflected at the national level. A 2021 scoping review of the participation of refugees in community-based participatory research (CBPR) in healthcare by Filler and colleagues (Filler et al., 2021), which reviewed 4125 articles, found that only fourteen met the inclusion criteria of incorporating Community-Based Participatory Research (CBPR) methods. In terms of refugee involvement in the various stages in the research process, 9 (64.3%) articles reported refugees having a role in the inception of the research, no articles reported including refugees in obtaining funding, 10 (71.4%) articles reported having refugees involved in community engagement/recruitment, 8 (57.1%) articles reported involvement throughout the data collection process, 4 (28.6%) articles reported involvement in data analysis, 6 (42.9%) articles reported having refugees involved in knowledge translation/dissemination. Only one piece of research reported having refugees contribute to scale-up initiatives. The piece highlights the need for communities to be included at every stage of the research process and not just during data collection and community recruitment. Guidelines for Best Practice Despite the lack of research which directly includes Community-Based Participatory Research with refugee and asylum-seeking communities, several guidelines for best practice when PAGE 20 engaging individuals from asylum seeking and refugee communities in research have been drafted by experts in the field, both internationally and in the United Kingdom. International Good Practice Guidelines In their guide for ‘Practical and Ethical Issues in Conducting Health Research with Refugees’ Canadian-based academic, Gabriel highlights that barriers may “emerge from language and cultural barriers, lack of education, financial difficulties, perceived lack of rights, dependency on host country governments, endemic hostility and a history of physical or emotional distress” (Gabriel, 2013, p.19-20). Challenges were also highlighted regarding ethical approaches to recruitment and participation due to perceived vulnerability. Although related to research more widely, the Australian Kaldor Centre for International Refugee Law’s Guidelines for Co-Produced Research with Refugees and Other People with Lived Experience of Displacement (2023) highlight important reflections on good practice. These guidelines are a product of a review of evidence on co-produced research and state “clear principles and strategies for individuals and organisations interested in undertaking, supporting or learning more about research that is co-produced with refugees and other people with lived experience of displacement” (p. 2). The recommendations were informed by the experiences of a range of stakeholders, including refugee representatives and NGOs, through a consultation process that provided opportunities for feedback and collaboration (p. 2). The piece reflects on use of language, best practice and the ways in which words can create a barrier to participation. UK Good Practice Guidelines Whilst not specific to refugee and asylum seeking communities, research focused organisations in the UK have produced a number of guides which consolidate best practice when engaging members of the public in health and social care research. The guides highlight the need to include voices which are historically marginalised and minoritised, including individuals from migratory backgrounds. PAGE 21 In 2018, INVOLVE and the Research Design Service funded the Reaching Out programme, a UK project whose objective was to focus on broadening involvement in research, supporting research partnerships and promoting “the development of new public involvement and engagement relationships, and new or more effective approaches to building relationships within communities in the Research Design Service localities” (NIHR, 2021a, p.3). As a result of this project, a practical guide to being inclusive in public involvement in health research was produced (NIHR, 2021a), with the intention of complementing NIHR’s (2021b) Being inclusive in public involvement in health and care research - paper which offers prompts to researchers and public involvement practitioners to support the inclusion of underrepresented or not traditionally involved groups in research on health, social care, and public health. The guide encourages researchers to reflect on their positionality and power-dynamics as well as providing practical examples, lessons and advice for working meaningfully with, and for, communities. The UKRI’s Good Research Hub’s Guidance on engaging the public with your research recognises that public involvement in research can take different forms and “can add value to the work of all researchers at any stage of their career and in any research field” and actively encourage researchers to engage the public in their research (UKRI, 2024). UKRI’s best practice guidance advises researchers aiming to engage the public in their research to have a clear purpose and reason to involve the public, as well as reflecting on the activities being formulated. The guide also highlights that working with non-academic partners such as community organisations and NGOs may be helpful in increasing the researchers’ ability to reach out to the groups they wish to include in their research, with transparency, mutual respect and a clear discussion on motivations and expectations, as well as on responsibilities, efforts, and benefits, being recommended to a successful partnership (UKRI, 2024). Academics working in the field have also reflected on the gender dimension of including individuals from refugee and asylum-seeking communities in participatory action research (Greenfields, 2018, p.137–153). The research which took place in collaboration with asylumseeking women and women with refugee status in London championed peer interviewers, empowerment of community organisations by sending them easy read information about the study in advance and best practice work with interpreters (Greenfields, 2018). Additionally, a PAGE 22 system of pre-interview screening of potential interviewees was adopted to allow for the identification of trauma among participants and guided the matching of potential interviewees to peer researchers, so that, where possible, “a match with country of origin, migration route, language, culture and faith” was achieved (Greenfields, 2018, p. 145). Conclusion This scoping review illustrates there is limited research locally and nationality on the barriers and opportunities for refugees and asylum seekers to engage fully and meaningfully in health and social care research. While statistics exist on asylum-seeking and refugee populations in wider UK regions, detailed recording of localised statistics, including how these communities utilise and engage with health services on the ground, primarily falls to civil society organisations. Although research exists nationally regarding refugee and asylum seeker experiences of access to healthcare and receiving services, there is a notable lack of healthcare research at the regional and local level which has specifically sought to engage these populations. Given that demographics vary significantly across the region, the challenges and barriers to research participation will differ from community to community highlighting the need for community focused place-based approaches. 2.2 Project Activities A range of direct engagement project activities were carried out between December 2023 and March 2024 by the research team, led by the EELGA SMP and ARU staff working in partnership. A total of 5 workshops (two online, two in person in Cambridge and one in person in Peterborough) to place. One joint/small group interview with two health professionals took place in Peterborough as it was not possible to convene a full in-person focus group in that locality given professionals’ time commitments. In addition, two further background scoping discussions with research colleagues from outside of the ICS locality but who were health researchers with experience of working with refugees and asylum seekers occurred. The mixture of locations and online options were chosen to maximise attendance. PAGE 23 Participants from community groups who work to support refugees and asylum seekers, (and who in some case themselves hold such status alongside paid or voluntary/Trustee roles in such organisations) were recruited for the community facing events by colleagues from the Strategic Migration Partnership team at the East of England Local Government Association, Cambridge Refugee Resettlement Campaign and British Red Cross, with agencies drawing upon their extensive community networks throughout the region to obtain maximum engagement. At in-person events with refugee and asylum support agencies, catering (freshly cooked lunch and other refreshments) was provided by local refugee outlets. Aligned to NIHR /INVOLVE and NICE best practice guidelines (NIHR, 2022), vouchers were supplied to individuals with lived experience of the asylum system, in respect of their expert input to the study and as compensation for their time. Although we have undertaken a consultation rather than research with refugees and asylum seekers and thus ethical approval was not sought for this project, care was taken throughout to adhere to best practice with relation to informed consent and taking a traumainformed approach to discussions, offering breaks, and noting the reactions and responses of participants in case any distress was caused by the subjects under discussion. One Strategic Migration Partnership (EELGA SMP) team member with lived experience of the asylum system, is a Mental Health First Aider (qualified in 2022) and throughout all of the sessions, they were alert to signs of distress and ready to intervene should this be necessary. Community Workshop inclusion criteria: 1. Community organisation representatives who have experience in working directly to support individuals with refugee status and people seeking asylum in accessing health and social care services 2. Community organisation representatives who themselves have refugee status or are seeking asylum As noted above, health professional participants were recruited by ARU, EELGA SMP, CRRC, BRC and NHS partners via their extensive health and community networks throughout the region. PAGE 24 Health Professional inclusion criteria: 1. Health and social care professionals who have experience of working with, researching, or treating refugees and asylum seekers 2. Health and social care professionals who had expressed an interest in working with or developing research in the future which includes refugee and asylum seeker populations Following receipt of detailed information about the project, participants all provided informed consent to take part in the consultation activities. Workshop and interview data was captured through a mixture of voice recordings (using professional standard recording equipment), video recordings (via Teams for online sessions), photographs, contemporaneous note-taking and livescribe illustrations depending on the location and activity type. Community Workshops Workshop 1 Volunteer Fire Brigade, Bourges Blvrd, 6.12.23 10am-1pm 11.01.24 1pm-4pm 01.02.24 10am-1pm 12.12.23 10am-1pm 16.01.24 10am-1pm 30.01.24 10am-1pm 29.02.24 10am-4pm Peterborough PE1 2AF Workshop 2 Friends Meeting House 12, Jesus Lane, Cambridge CB5 8BA Workshop 3 Online Health Professional/Researcher Workshops Workshop 1* Volunteer Fire Brigade, Bourges Blvrd, Peterborough PE1 2AF. Workshop 2 ARU, Compass House, 80 Newmarket Road, Cambridge CB5 8DZ Workshop 3 Online Final Stakeholder in-person event Allia Conference Centre, Peterborough Fig 7: Table of Project Events. *This workshop was replaced with an in-person interview with two participants at the same time/date. PAGE 25 2.2.1 Community Workshops As noted above, organisations working with refugees and asylum seekers in the region were invited to send representatives to join one of the three workshops aimed at bringing forward the voices of the people they represent or work with. In some cases, organisational representatives themselves hold refugee status. Workshops commenced with ‘icebreaker’ activities and introductions, followed by an overview presentation by EELGA SMP and ARU team members of the reasons why refugee and asylum seeker participation in research is important to support representative data collection and the development of inclusive practice which captures the experiences and needs of often ‘unheard’ populations, as well as the rationale for targeted outreach to refugee and asylum seeker groups. These activities were followed by breakout sessions to discuss in smaller groups the barriers that prevent or hinder refugee participation in research, before participants came back together and shared feedback. A second round of workshop/discussion sessions involved further breakout sessions to propose and discuss solutions to the collaboratively identified barriers to research engagement, before participants reconvened for discussions and to share feedback and reflect on collective recommendations. 16 people attended the Peterborough workshop, 10 people attended the Cambridge workshop and 12 attended the online session. At least 7 of the participants had lived experience. Organisations represented included Red Cross, PARCA, HELP, CRRC, Cambridgeshire County Council and Cambridge Ethnic Community Forum. 2.2.2 Health Professional Workshops Recruitment of health professionals to both in-person workshops in Peterborough and Cambridge proved challenging due to the relatively short timeframe to circulate information on these events and the limited capacity of health professionals to attend such relatively lengthy sessions due to work commitments. PAGE 26 The online workshop therefore had the highest number of participants. As a result of limited availability of professionals to participate in the Peterborough focus group, the two individuals who were recruited to the study, and who knew each other professionally, agreed to take part in a group interview. Workshops followed a similar format to the community ones but with a focus on knowledge and understanding of refugee and asylum seeker populations and experience of engaging them in research. Introductions and icebreakers were followed by breakout sessions to discuss, in smaller groups, the systems barriers that health professionals encounter in seeking refugee participation in research, as well as those challenges they perceive refugees and asylum seekers themselves face to research engagement, before discussing the feedback as a whole group. Fig 8: Board Game (board) This game which is inspired by the Refugee integration board game by Michelle Lam is designed to help you reflect on the challenges that members of the refugee and asylum-seeking communities may face when engaging with research participation. PAGE 27 In the Cambridge in-person workshop, a snakes and ladders style game designed by an ARU project team member (Coker) with input and contributions from the steering group, (see Appendix B) was used to bring to life common situations and experiences that individuals with refugee status and people seeking asylum encounter as they negotiate their new lives in the UK and engage in research. A second round of breakout sessions focused on discussion of potential solutions to the identified barriers, before participants returned to share feedback. 2.2.3 Final Stakeholder Event All workshop participants, project partners and research team members as well as members of the steering group were invited to attend the final stakeholder event at the Allia Conference Centre in Peterborough in late February 2024. The purpose of this full-day event (see Agenda at Appendix C) was to allow stakeholders to review the project findings, feed into the development of this report and identify priorities for the Action Plan, which had been prepared in draft by the research team. As with all the community workshops, a person-centred and trauma-informed approach was adopted, and the final event aligned to NIHR /INVOLVE and NICE best practice guidelines (NIHR, 2022) (see section 2.2 for more information). In total, 28 people attended the event in person and three individuals participated online. The event was further supported by a professional live scriber working with a group of five ARU MA illustration art students and their senior lecturer / course lead, who worked as a team to capture the key findings and outputs of the day in illustrative form (also used to illustrate this report). Illustrations produced during the event will form part of the students' final assessed projects and underpin their social action and community engagement development, rooted in their selfselection to participate in this project. Four of the five students also have lived experience of migrating to the UK themselves. Presentations on the rationale for the research, the project aim and activities and the findings were delivered in the morning session of the final event. This was followed by four breakout groups sessions to discuss the findings, with a particular focus on proposed solutions arising from both community members and health professionals. Each breakout group then provided feedback to all attendees. PAGE 28 Lunch was followed by a presentation on the draft Action Plan before further breakout discussions which required participants to focus on prioritising the most important recommendations to be taken forward in a mutually agreed, feasible Action Plan which consists of practical steps to support community groups, researchers and commissioners/ICB actors. The day ended with a panel discussion consisting of researchers, ICB representatives and advisory group members responding to questions about the project and reflecting on the event and overall programme of research. Fig 9: Student image capture from the final stakeholder event. 2.3 Analysis Notes and workshop materials were typed up by the project team and recordings were professionally transcribed by an institutionally approved service. All materials were then manually coded thematically by three members of the project team and cross-checked for accuracy. PAGE 29 Section Three: Findings This section documents the key findings that emerged from the overall project activities. We present separately the findings pertaining to barriers to research participation for refugees and asylum seekers identified by community representatives and health and social care professionals/researchers, then group together the recommendations from both categories of participant given the clear synergies in recommendations and overlapping thematic issues. It was abundantly clear that many of the barriers expressed by both researchers/health professionals and community group participants relate to refugee and asylum seekers’ experience of engagement with health services they receive, rather than simply concerning clinical and health related research. However, prior experiences and indeed barriers to access are inextricably entwined with opportunities for meaningful engagement with research and indeed attitudes towards participation, as we discuss below. Accordingly, it is essential to situate lived experiences within the context of this research, as such experiences impact and feed into perceptions and understandings of the NHS system, and consequently identifying and tackling such systems barriers can encourage research participation, in tandem with the targeted solutions, which support and encourage research engagement. PAGE 30 Fig 11: Summary of barriers and solutions as depicted by the live scribing. 3.1 Community Identified Barriers The following section of the report explores the perspectives of community organisation representatives who support individuals with refugee status and people navigating the asylum system. 3.1.1 Fear Fear emerged very powerfully as a key feature of the experience of people navigating the asylum system in the UK. Participants explained that ‘fear’, essentially falls into two entwined categories: fear of the system and fear of the authorities who govern the system. These concerns were repeatedly expressed throughout all research activities with community groups. Individuals with PAGE 31 experience of navigating the asylum system reported that they would be reluctant to participate in research as they were afraid of being seen and noticed by authorities due to perceived (and sometimes very real) links between the NHS and the Home Office (Liberty, 2024). This was expressed by individuals to varying degrees, depending on nationality, route of entry and experience of the UK asylum process (mirroring intersectional systemic discrimination based on ethnicity, race, class, and religion). Noticeably, such anxiety appeared to be of lower concern to Ukrainians and Hongkongers and to some extent decreased over time for those who had been longer in the UK. As such, mistrust of authorities was understandably cited as one of the biggest barriers to research engagement. One participant explained, ‘That’s one people worry about a lot, [and it makes them really suspicious], that suddenly they’re going to be deported, particularly if they’re a non-documented migrant or there’s something that doesn’t necessarily marry up entirely with the story…’ – Community Participant (Cambridge Workshop) Participants also expressed concerns around disclosing medical conditions such as ill mental health, TB, or HIV due to the stigma which can be connected to them. They also expressed anxiety that disclosure of such conditions could detrimentally impact their asylum claims or migratory status. That’s one people worry about a lot, [and it makes them really suspicious], that suddenly they’re going to be deported, particularly if they’re a non-documented migrant or there’s something that doesn’t necessarily marry up entirely with the story that they [would doubt in evidence].’ – Community Participant (Cambridge Workshop) The fear of engaging in health research among diverse refugees and asylum-seeking communities is also intricately linked to trauma, including historical traumas, as past experiences of persecution, displacement, state, and systemic injustices provoke anxieties. PAGE 32 3.1.2 Trust and Trauma Trauma from past experiences in home countries and during the migration journey can significantly affect willingness to participate in health research. Individuals may grapple with both historical trauma and new trauma linked to the asylum process and concerns about loved ones left behind. Additionally, many harbour specific fears related to healthcare professionals and interventions due to previous negative encounters in their home countries. One participant explained, ‘And if people, you know, particularly from community where there's been a lot of hospitals used as places of torture or you know, information passed on directly or being detained in hospital, there's no way someone's going to want to go into that type of context’ - Community Participant (Online Workshop) The fear of being alone with someone of a particular age, ethnicity, or gender, especially for people who have experienced interrogation, sexual and gender-based violence in the past, emerged as a prevalent outcome of prior trauma. One person explained, ‘Also quite alarmingly, we found one person was talking about in their country of origin you’d go in, and you’d see a doctor and you’re actually at risk of being killed if you’re from a political [opponent group/family] - so you might be given a nasty injection, and you don’t come out.’ Community Participant (Peterborough Workshop) This apprehension often reflects a deep-seated lack of trust, which has been moulded by past encounters where authorities and systems meant to protect them have let them down. Within healthcare settings, there exists a palpable power imbalance, where refugees and asylum seekers may feel disempowered and vulnerable compared to healthcare professionals. Similarly, within research relationships, this power dynamic can exacerbate their fears, as they may feel hesitant to engage fully due to concerns about exploitation or re-traumatisation. When reflecting on this power imbalance, one participant explained: ‘[...] but I was thinking the physical triggers. We had a guy who sat at a table with someone and if the person sat on the other side, he became really uncomfortable. It was like a formal interrogation but actually, when she sat next to him, he was fine, he was much more comfortable. PAGE 33 So small things like that, sitting opposite the table like this is quite intimidating’ - Community Participant (Peterborough Workshop) 3.1.3 Lack of Knowledge about the UK Health System The complexity of the NHS system, encompassing referrals, rights, and distinctions between primary and secondary care, poses a significant hurdle to healthcare engagement for refugees and asylum seekers. Understanding this system requires time and support, making it challenging for newcomers to adapt to the UK's healthcare approach. Without sufficient assistance from community organisations or local authorities, many new residents find themselves struggling to navigate the system, unsure of how to access appropriate care or inquire about alternative services. One participant explained that: ‘I think authority is possibly a barrier. And not understanding the system…. I find with so many of them. We’ve grown up with it, we know it automatically. We don’t know, what we don’t know [about the experiences of others]’ - Community Participant (Cambridge Workshop) This lack of clarity or understanding often translates in practice to negative experiences when attempting to access treatment. For individuals who have previous negative associations with medical systems, this can further compound their stress and anxieties. ‘From our previous session, several of the community reps actually had experience themselves, of the asylum system, who’d then moved into other volunteering or paid roles, and one of the things that came out from that was people’s poor experiences or fear of torture, or that medics might then report them to a state authority. [...] Especially asylum seekers, yes.’ - Community Participant (Cambridge Workshop) It was also noted that the complexity of understanding the NHS system interacts with lack of understanding of the UK system more generally, in terms of how education and other aspects of life in Britain work, increasing stress. PAGE 34 3.1.4 Gatekeepers The strict control exerted by gatekeepers over access to health professionals emerged as a major concern and significant barrier to refugee and asylum-seeking communities experiencing the health system positively. Receptionists and administrative staff were frequently perceived as displaying a hostile and dismissive attitude towards individuals from diverse cultural backgrounds who may not speak fluent English. One participant explained, ‘I find receptionists are very rude and abrupt at doctors’ surgeries, very difficult to just communicate with and they don’t want to talk to you. They won’t even look at you while they’re typing. That doesn’t help at all, does it?’ - Community Participant (Peterborough Workshop) Confusion and misinformation among NHS staff regarding the legal status and entitlements of refugees and asylum seekers frequently result in inappropriate requests for proof of residence or legal status, unnecessary documentation, or even upfront payment. These actions contribute to feelings of unease and exacerbate existing fears among those seeking healthcare. Furthermore, negative experiences or misunderstandings regarding entitlements and interactions with service providers can quickly spread within communities through word of mouth or online forums, further hindering engagement. Insufficient staff training can compound communication challenges with refugee and asylum-seeking groups, amplifying the lack of understanding and empathy experienced in some encounters with professionals and gatekeepers. 3.1.5 Lack of Knowledge about Research One of the main hurdles to research participation stems from cultural differences in understanding health research and eligibility, compounded by a widespread unawareness among PAGE 35 refugees and asylum seekers about their opportunities for involvement in UK research. Commonplace fears and misconceptions about clinical research arise from variations in medical systems, particularly the limited patient involvement in their home countries compared to the UK's approach. Notably, research is often associated with clinical interventions rather than psycho-social or qualitative/mixed-methods health and wellbeing studies. Individuals with distressing or negative experiences with health professionals, whether in their home countries or in the UK/during detention, may harbour profound concerns about being subjected to clinical "experimentation." Moreover, initial information about research projects shared through word of mouth by researchers or community groups can sometimes lead to distorted perceptions and incorrect assumptions. Additionally, researchers frequently fail to share information about potential projects with community organisations, which could offer better understanding and reassurance to beneficiaries and thus support research engagement. Even when opportunities are publicized, common fears among refugees and asylum seekers include worries about sharing personal information, data sharing concerns, and logistical challenges like digital exclusion or limited resources for registration. Furthermore, a lack of understanding about research concepts and their potential benefits, coupled with immediate needs upon arrival in the UK, often serves as a significant disincentive to participation, particularly when the short-term benefits for individuals or their families are unclear. When individuals participated in research, it was observed by some community representatives, including those with lived experience of the asylum process, that there was a potential concern regarding the desire to please and be helpful when responding to questions, surveys, or questionnaires as opposed to providing honest opinions. One participant explained, ‘Do you think people are, potentially, likely to say that they think the doctor or researcher wants to hear in that case, rather than actually what’s going on for them? I think very often that would be the case. It appears it’s not just because they’re scared. ... It’s embarrassment. [...] PAGE 36 Well, no, it’s also because, in some cultures, you’re taught to say the positive and not the negative. My African background teaches me to say, “Yes,” even [when not appropriate.] say, “Yes,” because they want to please you. [...] Yes, because they want to be helpful.’ - Community Participant (Cambridge Workshop) The interplay of power dynamics and cultural norms can pose challenges in determining whether meaningful consent has been obtained, a theme that emerged in discussions with both health professionals and researchers. Additionally, refugee and asylum-seeking research participants often face obstacles in providing a comprehensive health history due to challenging circumstances. For instance, some individuals may lack vaccination records or have limited information on family medical histories, particularly if they were separated children. Participants expressed a desire for more empathetic responses from professionals in such situations. Furthermore, several participants cited a lack of feedback or communication about research outcomes as a barrier to their willingness to engage in research. This perceived disregard for their involvement left them feeling disrespected and contributed to the belief that their data was collected in an exploitative manner. 3.1.6 Lack of Time and Competing Priorities It was widely acknowledged among participants that a significant obstacle to participation is the lack of capacity or emotional energy among individuals, who are often preoccupied with more pressing priorities and unmet basic health needs. Recently arrived refugees and asylum seekers understandably prioritise addressing immediate concerns and navigating their current circumstances, making it challenging for them to contemplate future commitments. One person explained, ‘[...] and I've got a broken leg where can I get that fixed? [...] I don't know where my food is gonna come from? I don't know if my children's going to be able to stay with me tonight. All this of the PAGE 37 very basic needs outweighs anything for people wanting to participate in any kind of research’ Community Participant (Online Workshop) In scenarios in which civil society organisations collaborate with a relatively stable local cohort or population of refugees and asylum seekers who may be open to engaging with research given adequate support, significant bureaucratic hurdles and limited staff resources were emphasised. Comprehensive support and facilitation from community organisations are crucial for researcher access, but the lack of such resources poses a substantial barrier to ensuring the inclusion of refugee and asylum seeker voices in health research. 3.1.7 Practical Barriers and Dispersal Individuals with refugee status and people seeking asylum who want to participate in health research may also face practical challenges, such as transportation costs to reach research sites, especially when these are located in clinical settings or when participants are required to pay for travel upfront and then seek reimbursement. Lengthy travel times, potentially involving multiple changes or inconvenient timings, can further complicate access to research settings, particularly for those needing to coordinate with childcare or school schedules. In rural areas, the lack of integrated transport options and the affordability of travel pose additional obstacles. ‘In fact, we started seeing people coming on the bus from Lincolnshire, two hours away. [...] (And there was nowhere nearer so that they could get a SIM card.) They just came for a SIM card, two hours on a bus.’- Community Participant (Online Workshop) PAGE 38 A lack of staff time and financial support can also pose a barrier to community groups and NGOs supporting engagement in research by the individuals who use their services, even when all parties would be keen to participate. Many civil society agencies do not have adequate staff available to deliver support communities, in person particularly if to this involves extensive travel and the requirement to support through translation, reassurance etc or where researchers cannot pay for staff time as well as travel for anyone other than the participant in the research. Frequent relocation by the Home Office, often with short notice, has significant repercussions on both support networks and medical access for refugees and asylum seekers. Sudden moves can disrupt existing appointments and affect their place on waiting lists, hindering their ability to engage in research participation. Moreover, relocation to rural areas often results in diminished social support, community engagement, and access to transportation, further impeding involvement in research and other services. One participant explained, ‘For asylum seekers, once you have been here for six months waiting then you are eligible for funding to go to college or whatever to do any sort of course. But then there’s normally a waiting list for the college courses and quite often people are moved around, so you might wait six months to be eligible, then wait six months on a waiting list and then get moved and have to wait another six months. That does happen.’ - Community Participant (Cambridge Workshop) The duration of stay in the UK was identified as a factor affecting both healthcare access and willingness to participate in research. Community organisations generally agreed that recent arrivals are preoccupied with navigating the asylum process and adjusting to life in the UK, making it unlikely for them to engage in research during the early stages of settlement. Adjusting to a PAGE 39 new country is challenging, and even with access to support and absence of trauma, learning new systems and adapting to a different way of life requires significant time and energy. 3.1.8 Communication Barriers and Language Participants consistently highlighted language barriers as a significant obstacle, expressing frustration over issues such as inadequate or unqualified interpreters, poorly translated educational materials, and a lack of essential vocabulary for communicating with healthcare professionals. Participants repeatedly voiced frustrations with the interpreter system utilized within the NHS and related statutory systems. Many cited challenges such as a shortage of interpreters with both cultural understanding and linguistic proficiency relevant to the population they serve, as well as difficulties in accessing and scheduling translators without adequate support. Concerns were raised regarding the lack of transparency regarding interpreters' qualifications and their competency in various dialects spoken by refugees and asylum seekers, potentially leading to miscommunication between community members and interpreters. Confidentiality issues were also highlighted, particularly within smaller communities or when refugees and asylum seekers had to rely on family or friends for interpretation. While the use of family or friend translators is recognized, it is not considered best practice, especially when discussing confidential health matters. This practice may be especially inappropriate when minors are assisting family members in accessing services. Additionally, specific cultural considerations, such as avoiding booking male interpreters for women in many cultures, were often overlooked when arranging interpreter services. One participant explained, ‘Also, you know, the choice of translator, you’ve got to be really careful with that. I had one instance recently, when they bought a male translator for a woman. She just stopped talking’ Community Participant (Cambridge Workshop) During a workshop, a participant mentioned that they were aware of instances where GP receptionists or other administrative staff with language skills present on the premises were informally brought in to assist with patient communication. It was also noted that reliance on PAGE 40 telephone interpreters in many cases posed significant challenges for both patients and healthcare professionals, with some struggling to hear clearly. Additionally, there were instances where inappropriate interpreters or translators were provided, speaking a different dialect or language, further complicating effective communication, Participants also explained that a lack of culturally sensitive and appropriately translated educational materials often led to misunderstandings and distrust among refugees and asylum seekers. ‘And the people who received the information, the way it's been translated is they actually thought it was telling them they must not have more children, and that they would be sterilised, and nobody actually wanted to engage with something which is actually about good parenting support. So, ... that had massive complications, implications as you can imagine for that particular community. – Community Participant (Cambridge Workshop) Language and communication challenges are widespread concerns among refugees and asylum seekers, who often feel frustrated by their inability to effectively express themselves and perceive a lack of understanding from healthcare professionals, authorities, and others in daily interactions. This frustration can lead to self-censorship to avoid misunderstandings or negative perceptions. Additionally, individuals may struggle to articulate their needs or reasons for seeking medical care when faced with language barriers or limited access to interpreters. These difficulties are particularly pronounced in formal or unfamiliar settings. Furthermore, while refugees and asylum seekers with higher education levels may be more familiar with research concepts, language barriers persist, with complex terminology and phrasing from healthcare professionals and administrative staff exacerbating feelings of unease and powerlessness. One participant explained, I might say [use] slang. To me, we might mean the same thing but because the English is not very clear, so I can't really express myself so they [potential participants] don’t really sound too sure about it [what was explained]. - Community Participant (Peterborough Workshop) PAGE 41 Digital Exclusion Access to digital technology poses significant challenges for refugees and asylum seekers, impacting their ability to access vital information and engage in healthcare and research opportunities. Refugees and asylum seekers are often provided with SIM cards by charities to facilitate communication, yet they frequently lack access to mobile phones with advanced functionalities, limiting their ability to utilise the internet, even if they possess sufficient English and IT literacy to navigate online forms and documentation. Consequently, when information must be input digitally or is exclusively available in this format, many individuals are unable to access or retrieve it without assistance, compromising both their dignity and confidentiality. These digital barriers not only hinder access to various forms of healthcare but also impede awareness of opportunities for research participation. One participant explained, ‘Because it’s [documentation/appointments etc] going online now, and so many people can’t have access to… Let’s say, for example, you’ve got refugee seekers, not everybody has access to the internet’. - Community Participant (Online Workshop) 3.1.9 Lack of cultural understanding among health professionals In workshop discussions, a common theme emerged: researchers and professionals often assume that communities can easily unite for research purposes. However, nuanced reflections reveal internal divisions based on factors such as gender, class, skin colour, sexual orientation, disabilities (especially culturally stigmatised conditions), religion, or membership of specific ethnic or political groups. These overlooked issues of heterogeneity can pose significant barriers, as individuals may be reluctant to share personal stories in front of others they perceive as different or unequal. The inability to relate to fellow participants in language-based events or to feel a sense of commonality with others from the same country of origin emerged as clear concerns among civil society agencies supporting refugees and asylum seekers. One participant explained, And he says, “Yes, I am a snob.” I said, “But why? You’re all here together, you all came together.” “It’s like talking to peasants,” he said. Now, one of these ‘peasants’ is a doctor, another is an IT PAGE 42 [expert], another is a pharmacist. But he was very high up in government, this guy, and so he keeps his distance. And I just wonder if that would come into… [...] Well, it certainly could in focus groups, and I’ve seen that in focus groups as well. That’s why we’d always say they don’t [always work]. Because they don’t feel they’re mixing with their own’. -- Community Participant (Cambridge Workshop) Confidentiality emerged as a major concern in discussions regarding engaging participants from the same community, where individuals may fear their conversations being shared within community networks. LGBTQ+ individuals, significant in particular, barriers in face sharing information openly in front of their peers. Interactions with other communities can also alter behaviour, especially where historical perceptions or experiences in countries of origin influence how each group views others. Professionals need to be mindful of the nuanced considerations related to ethnicity, religion, class, preferences, and beliefs, requiring great care and access to civil society support to construct safe and meaningful engagement opportunities for refugees and asylum seekers in research settings. 3.2 Health and Social Care Professionals’ Identified Barriers The following section of the report explores the perspectives of healthcare professionals who actively participated in the workshops or interview and who either have experience of undertaking research with refugees and asylum seekers, or who are keen to enhance inclusion of the populations in their research activities. PAGE 43 3.2.1 Lack of Trust In common with findings from community members, ‘lack of trust’ emerged as one of the main recurring themes cited by health professionals as a barrier to engaging refugee and asylum seeing communities in research. Distrust was recognised as stemming from historical injustices, cultural differences, or systemic biases, creating significant hurdles for establishing productive research partnerships. One health professional reflected that, ‘Historical research that has been done. on .. either ethnic minorities or other minorities, that it's very problematic. I mean, we're talking like years and years and years ago, but that stuff kind of can remain in the culture and that distrust of research can remain, and rightly so’. - Health Professional (Online Workshop) These fears may also be rooted in past personal experiences of exploitation, discrimination, misinformation, or bad experiences with other UK institutions such as the Home Office. It was noted that lack of trust can create anxiety towards participating in research activities underscoring the need for transparent communication and a trauma-informed approach to working with communities. One participant reflected on the impact of asylum system processes on their ability to build trust with communities, ‘The actual kind of process of being questioned by the Home Office can actually sort of set up an instance of distrust, but also a lack of safety and kind of the processes which might sort of feel like they're being mirrored when they're engaging with health professionals or research’ – Health Professional (Online Workshop) Another factor health professionals felt may influence trust and open dialogue and mitigate engagement with research is that community members may not fully understand the purpose, processes, and potential benefits of engaging in health research (a theme which also emerged in community workshops). Misconceptions about (and unfamiliarity with) research practices may deter participation and ultimately hinder the co-creation of culturally relevant interventions. PAGE 44 ‘They [refugee and asylum-seeking participants] didn't want to kind of give constructive criticism because it's maybe not something that's often done in their cultures…be we do really want their feedback’ – Health Professional (Online Workshop) In addition to the issue of needing to overcome mistrust from community members themselves, health professionals highlighted the impact of wariness from gatekeepers, such as community organisations and NGOs working with refugee and asylum-seeking populations. They expressed concerns that such organisations, with the best of intentions sometimes limited individuals' agency, impeding their ability to make their own decision about whether they would like to participate in research. ‘I think it also comes down to what organisations and charities are willing or not, to allow as well. They all vary quite considerably. So yeah, in terms of [a] spectrum, kind of extremes from really, really helpful and then very, very gatekeeping, it was almost like an ownership over their clients, and it just ethically just really didn't sit right with me at all’ – Health Professional (Online Workshop) Alongside the issue of perceived lack of trust from community partners and potential refugee and asylum seeker participants, researchers also expressed doubts about their own capabilities to navigate power dynamics and their own lack of trust in research systems to protect them when undertaking what may be seen as ‘risky’ research, particularly in clinical settings. Professionals openly acknowledged that the ethical challenges and power imbalances inherent in researcherparticipant relationships require particularly sensitive attention when working with vulnerable populations such as refugees and asylum seekers, prioritising autonomy, respect, and informed consent whilst guarding against coercion or exploitation. However, the health professionals we interviewed also overwhelmingly expressed apprehension about knowing how to handle these situations, particularly when financial incentives were involved which could be seen as influencing participation of individuals who are facing extreme poverty or exclusion. ‘I think in research generally a little bit, but particularly with this group because of the money issue that we were speaking about, often research provides financial incentives. And I wonder whether there's maybe some considerations in terms of consent and whether people are PAGE 45 consenting for the right reasons, I suppose, or whether it's because they just are so stretched that they really need money. So, they're consenting to things that maybe they wouldn't have done if they didn't need the money’ – Health Professional (Online Workshop) As a result, healthcare professionals articulated widespread anxieties regarding potential repercussions of inadequate consent processes or research misconduct. Health professionals in all discussions/workshops expressed fear of litigation noting this may lead to risk-averse practices, potentially hindering innovation and inhibiting genuine community engagement. ‘I work as a researcher, I know this is an awful thing to say, I have a litigation fear myself. If something goes wrong with the person at the clinical trial, can I be accused of not presenting all the facts. Can I be accused of having a big cultural blind spot that I didn't know about which is actually indirectly affecting the clinical trial? - Health Professional (Cambridge Workshop) 3.2.2 Researcher’s Lack of Cultural Awareness and Training A significant challenge highlighted by health professionals throughout the workshops were concerns about their own lack of awareness and understanding regarding diverse refugee and asylum-seeking communities. Researchers explained that they encounter difficulties in fully understanding the nuanced heterogenous cultural backgrounds, experiences, and needs of these communities, which can impede effective communication and engagement in research. ‘I guess in thinking about, you know, it's [refugees and asylum seekers] a very big heterogeneous group of people. And therefore, depending on where you are in your journey, the barriers are going to be very different, we often don’t fully understand that.’ - Health Professional (Cambridge Workshop) Furthermore, health researchers felt that the absence of cultural awareness training, both in clinical practice and as researchers, exacerbates this issue, leading researchers to rely on assumptions and generalisations that may not accurately represent the diversity and complexity within refugee and asylum-seeking populations (and see reflections on heterogeneity articulated PAGE 46 by community participants at 3.1.9.). Such assumptions it was noted, can inadvertently perpetuate stereotypes and biases, undermining the trust and rapport necessary for meaningful research partnerships. ‘The only training, we have, and I wrote it down [before attending the workshop], is an old training on FGM which has not been done in more than 10 years, and also the Prevent policy, which makes sure that we see everybody as if they are a potential terrorist. That's all of the training we get. You're lucky if the doctors in your clinic read the newspapers, frankly’ Health Professional (Cambridge Workshop) 3.2.3 Practical Barriers Faced by Communities and Health Professionals In addition to identified barriers stemming from a lack of mutual understanding and trust, health professionals with experience of conducting research highlighted practical obstacles that hindered the meaningful engagement of refugee and asylum-seeking communities in health studies. These practical barriers were noted as affecting both researchers and the communities themselves. Researchers reported encountering challenges such as a lack of time or capacity to build meaningful longitudinal relationships with external agencies and communities; uncertainty about where to seek advice regarding working with refugee and asylum-seeking communities; difficulty in offering research opportunities to communities (not least because of the hurdles of establishing whether fully informed consent has occurred, or the impacts of incentives on potential participants) and structural constraints emerging from ethics governance in academic and clinical settings. A key finding pertained to barriers to, and delays in, commencing research with communities emerging from misunderstandings by ethics panels unfamiliar with refugee and asylum-seeking populations. Insufficient funding or short-turnaround timelines reduced the scope for involving communities in proposal preparation and dissemination. This latter point is particularly problematic as funders typically require a full research proposal which can minimise coPAGE 47 production as community groups often do not have time – unless prior relationships exist, or funding can be made available to facilitate their engagement - to meaningfully participate in application development prior to submission. Moreover, funders may limit the resources which can be made available to community organisations to support research engagement, failing to recognise the amount of under-pinning work required to assist community members to attend and participate in activities, as explored in 3.1.6 above. When reflecting on their prior work with migrant communities, one researcher commented, ‘[We wanted to] Kind of show face a little bit for a while to get to know people, to kind of build a bit of rapport and trust. But we weren't really able to do that… anyway because of the time. There was limited funding, so that kind of didn't really allow us to do everything that we wanted to do anyway either. So that aspect of it I think made it really quite difficult. Health Professional (Peterborough Interview) Researchers also highlighted the issue of inadequate cultural competency within university ethics panels, and that that panels frequently fail to draw on external experts who could comment on the feasibility and design of applications to support engagement in a safe and meaningful manner. Participants repeatedly expressed concern that ethics panel members tend to err on the side of caution, potentially constraining researchers' capacity to engage in collaborative co-design and Patient and Public Involvement (PPI) initiatives. Furthermore, researchers commented that they felt that a significant lack of awareness exists amongst ethics panel members regarding the rights to health access, right to work and migratory status impacting refugees and asylum seekers. One participant commented that this lack of understanding can result in the refusal of applications if researchers attempt to justify the need to compensate community researchers or participants for their valuable time and contributions, particularly if using vouchers rather than standard financial remuneration: ‘When you're doing stuff around food poverty and kind of deprivation and that sort of stuff is the whole thing around vouchers as reimbursement for time, I think that's definitely something that ethics committees probably need, whether it's training or some sort of modernisation around that. Our ethics panel can sometimes be a bit funny around giving vouchers for reimbursement for time, and I think I really there were few questions, if I'm remembering now, actually [that’s] why we PAGE 48 resubmitted. I think there were a few questions around reimbursement for time in our application because it was a group of people [and this] related to their legal status and the university [needing assurance] – Health Professional (Online Workshop) Health professionals also identified that communities themselves face practical hurdles impacting consistency in participation, for example due to frequent relocation by the Home Office, limited capacity to engage owing to the complexities of the asylum process, and a desire for immediate identifiable impact or change emerging from research outcomes, which may not always be feasible. ‘The accommodation and the transient nature …. If people are in an initial accommodation centre, they don't know how long they're going to be there, they might be there a week, they might be there 10 weeks, and they won’t necessarily have any notice of when they're going to move or where they're going to move to. So, trying to engage in anything long-term is not necessarily realistic because next week they might be sent elsewhere in the country’ – Health Professional (Cambridge Workshop) 3.2.4 Communication and Language Barriers Health professionals underscored the critical importance of having culturally competent, trained, and empathetic interpreters to facilitate effective communication during health research. They explained that similar to healthcare practice, researchers frequently find themselves resorting to ad hoc solutions, including using family members for translation, or engaging remote interpreting services which may not always provide a consistency in quality of interpreting, ‘it's extremely sloppy, but it's the reality, that we have to use ad-hoc interpreters. And that's extremely difficult when it comes to research, because you never know if a family member, and it happens in healthcare, is actually consenting on somebody else's behalf, fully understanding or fully taking responsibility’ – Health Professional (Cambridge Workshop) PAGE 49 Participants also raised concerns that whilst some interpreters in these companies prove proficient, others may harbour biases and views that discriminate against patients or research participants thus eroding their safety and feelings of trust, ‘It has happened on occasion where you get somebody, especially… well, I shouldn’t really say the geographical area, where these pre-existing cultural barriers in their heads play into the conversation where somebody will say that they have been in prison for a crime, for example, and the interpreter immediately becomes hostile… Many times, the interpreter becomes very defensive and starts being aggressive with the person. Summarises what they say. They don't allow them to even talk about their physical complaints, and it's very obvious even to me, not speaking the language – Health Professional (Cambridge Workshop) Finally, health professionals, in common once again with community representatives, discussed the significant impact of digital exclusion and literacy challenges as additional barriers hindering research participation for asylum seekers and refugees. They noted that asylum seekers and refugees who are often marginalised and with limited financial resources, may encounter difficulties navigating online platforms, accessing digital resources, or participating in virtual research activities. Moreover, language barriers compounded with digital illiteracy have the potential to exacerbate such problems. Health professionals strongly articulated a need for proactive measures to promote digital inclusion, such as providing access to technology and digital literacy training, providing sim cards, and making sure research does not only occur online. ‘One of the things that came up in our discussions is illiteracy. So, it's a really big issue. It's not just about language, but the ability to read and digital literacy. So, you know, if you're asking them to take part with stuff on the computer and things [that can be a barrier] and the other thing that came up was because of the issue, it would be helpful to support people with this, provide SIM cards and [develop] computer skills’ – Health Professional (Online Workshop) PAGE 50 3.3 Solutions The subsequent section delves into solutions proposed by healthcare professionals and community members. These are considered together here, given the similarity of some of the suggestions aimed at overcoming barriers identified in sections 3.1 and 3.2 of this report. Other than challenges pertaining to funders and ethics panels which largely emerged in the discussions with health professionals, there were striking similarities between the proposals articulated by both groups, but in part this is likely to relate to the self-selected nature of health professionals/researchers who participated in this consultation, as these participants are clearly engaged with how to ensure meaningful refugee and asylum seeker participation in health research. These solutions include strategies for building trust, enhancing researcher training and cultural awareness, and implementing practical measures to support both researchers and community members to engage in research. Fig 12: Summary of the solutions proposed by health professionals and community organisations. PAGE 51 Both community representatives and health professionals highlighted many similar barriers and solutions, as evidenced by the collaborative group discussions held during our stakeholder event. However, certain solutions proposed exclusively by community members shed light on the blind spots that some health researchers may possess. 3.3.1 Solutions for Building Trust Co-design and collaboration The health professionals we interviewed suggested several key strategies to overcome barriers which hinder the engagement of asylum seekers and refugees in health research. Foremost among these is the importance of collaborating closely with community groups to build trust and foster authentic partnerships. Community workshop participants emphasised the importance researchers actively crafting of a positive narrative, which reduces fear of malignant state intervention in research. This could most effectively be undertaken through co-design and collaborative research methodologies. They highlighted the need to demonstrate that institutions such as Local Authorities and the NHS, which provide funding and support for research initiatives, can serve as positive entities rather than merely being complicit in perpetuating government policies which may make the lives of refugee and asylum-seeking communities harder. PAGE 52 ‘We talked as well about the issue of fear, which you know as we know is a major barrier. And that often being – sort of requiring ... a cultural shift in understanding that... the state the role of the state can be helpful and supportive as well as you know coercive or repressive, as that as that might sort of informs people's background and experience. That's off the question of time [in the UK impacting involvement]. However, if people see others in their community participating in research, they might obviously... help to bring them along in understanding that. That you know it's not something necessary to be feared but something that can be positive experience’ – Community Participant (Online Workshop) By involving community groups in the co-design of research projects from the very beginning, researchers can ensure that studies are culturally sensitive, relevant, and respectful of community needs and perspectives. One health professional noted, ‘I think that this is where the co-creation sort of thing is quite important, too ... have those community member advisory groups that are with you all the way through the research process’ – Health Professional (Online Workshop) Community members also proposed a codesigned researchers approach into all that integrates phases of peer research, emphasising the crucial role of individuals with shared lived experience in facilitating research. ‘It was extremely successful the way that that the [education] research was planned because they had peer researchers. They had people of their own age, their own ethnicity, speaking their own language, who have been trained up by professional researchers, to actually do the interviewing and things like that. And it was enormously helpful’ – Community Participant (Cambridge Workshop) However, some individuals cautioned that while this approach fosters rapport and understanding, it might inadvertently create barriers for some individuals. It was noted by some PAGE 53 community participants that at times refugees and asylum seekers express a preference for being interviewed by individuals from outside their community, believing it would afford them a greater sense of openness and guarantee of impartiality. One participant explained, ‘Some communities will find that commonality of experience and be able to build trust on that basis. Whereas other people from different countries perhaps will not trust people from the same country for whatever reason’ - Community Participant (Peterborough Workshop) This nuanced perspective, widely shared by community representatives, underscores the complexity of engagement strategies which incorporate peer-researchers, emphasising the importance of research design which allows some degree of flexibility and sensitivity to individual preferences within methodologies, despite the challenges this may bring when requesting funding or applying to ethics approval with such variables or alternative pathways embedded into design. Long-term engagement Community groups repeatedly emphasised the necessity of establishing long-term engagement with refugee and asylum-seeking communities in order to cultivate trust and consistency, before embarking on research. One community member questioned, ‘What would help people to feel more trusted or to feel more comfortable? Is it having perhaps a person or an organisation that they feel they can rely on, they have that relationship with, perhaps? Again, there’s always a turnover of people. [So] how do you maintain those links in a way that they still feel supported?’ - Community Participant (Peterborough Workshop) Participants at the final stakeholder event where we brought together community and researcher participants suggested that such an approach could entail fostering symbiotic relationships between community organisations and universities/ research institutions. In such an ideal type of mutually beneficial relationship, students and staff could volunteer with local support organisations, while NGOs would in turn gain access to university facilities for meetings, be PAGE 54 invited to participate in and contribute to various events, providing a platform for their work and also collaboratively scope and explore funding opportunities and agree on research priorities 9. By nurturing such collaborative partnerships on a longitudinal basis, a foundation of transparency, mutual benefit, and trust can be established. Consequently, when the time arises to engage in co-design processes and conduct research, there exists a well-established rapport that facilitates seamless collaboration to support meaningful, valid outcomes. Better communication of research aims Both community groups and health professionals emphasised the importance of enhancing communication and transparency throughout the entire research process. They suggested that this should entail effectively managing expectations and clearly articulating the research goals and limitations to community members. Participants in community workshops stressed the importance of researchers being clear about what can and cannot occur, timelines, and the leadin time impacting impact from the outset: ‘And I guess another thing if you're building trust is giving people really clear and honest information at the beginning, isn't it, and then sticking to your words’ - Community Participant (Peterborough Workshop). Both groups thought it was important to communicate that participation in research may not immediately result in tangible changes and to manage expectations of participants accordingly. Discussions in all workshops and at the final stakeholder event, explored and agreed on a core aim of fostering open dialogue and transparency. It was agreed that researchers should work to build trust and ensure that community members have a clear understanding of the research aims and potential outcomes; but at the same time, researchers should explicitly foreground aims 9 Such models are indeed currently under development as part of embedded future governance approaches across Anglia Ruskin Universities research, innovation and impact thematic groupings: https://www.aru.ac.uk/research/why-research-at-aru/safeand-inclusive-communities; https://www.aru.ac.uk/research/why-research-at-aru/health-performance-and-wellbeing and https://www.aru.ac.uk/research/why-research-at-aru/sustainable-futures PAGE 55 within the research design which would benefit refugee and asylum-seeking participants in both the short, medium, and longer term. One health professional suggested that: ‘We need to build those research projects with an integral community development part of it, so that it, you know, it's that action and research altogether, action research basically [delivering] something more tangible in terms of benefits’ - Health Professional (Online Workshop) In addition to fostering relationships based on transparency and trust, participants in the community workshops shared their experiences of being bombarded with numerous research requests to support research initiatives and how this can lead to confusion or even resentment or burn-out. Similarly, during the final stakeholder event, participants deliberated on the tendency for research responsibilities to disproportionately fall on the same organisations and individuals who are receptive to research engagement, and who (potentially) possess the capacity to engage through having staff or volunteers with experience or interest in research. Consequently, there exists a risk of further marginalising certain community groups and/or individuals within the refugee and asylum-seeking communities who may be perceived as not having capacity to support research, lack adequate English language skills or who may be initially more reluctant to engage. One community participant commented: ‘We’ve got communities at the forum and if there’s research here, research there, and they say, “Well, what’s this?” “another and another-” “another survey?” You know, if you make them understand more what it is in there for them and what the other party is bringing, and how they [researchers] are behaving and how they are putting everything together, I think that may help’. - Community Participant (Peterborough Workshop) It was also suggested by both groups that utilising visual aids such as infographics or vlogs to communicate research aims could enhance comprehension and engagement among individuals with diverse linguistic and literacy PAGE 56 backgrounds, and as a result build trust through greater transparency. One health professional reflected: ‘And I wonder whether or not if, one of the barriers was just a general understanding of research and, you know, [emphasising] we're not here to harm you, [and] whether or not we could have multiple language [information]. And just to break down some of those myths about what research is. Maybe that is something that's quite a neat, say... not easy, but a nice little packaged project that could be done - as part of this [recommendations] with visual aids’ – Health Professional (Online Workshop) This was echoed by a community workshop participant who stated, ‘Having something - literature in in in a suitable language, but also nonvisual materials. That are really helpful and that can really clearly explain and communicate what the research is, and you know how it benefits people, what the process looks like and what the end results might be and how really just sort of demystify [research and] what that's all about.’ - Community Participant (Online Workshop) Trauma-informed approaches Both groups suggested that adopting a trauma-informed approach10 to research could acknowledge and address the unique experiences and sensitivities of asylum seekers and refugees, promoting a safe and supportive research environment. It's essentially a trauma informed approach that’s needed, so it's looking at all of the research processes that could potentially have some kind of traumatic impact on the participants. So, like we say, the questioning, you know we have an interview, don't use that word interview. You know A trauma-informed approach to research involves recognising the prevalence and impact of trauma on individuals and communities and integrating this understanding into all aspects of the research process. It emphasises creating safe and empowering environments for participants, respecting their autonomy and choices, and prioritising their well-being throughout the research journey. This approach involves fostering trust, establishing clear communication, and implementing practices that minimise the risk of re-traumatisation. See for example, Alessi, E.J. and Kahn, S., 2023. Toward a trauma-informed qualitative research approach: Guidelines for ensuring the safety and promoting the resilience of research participants. Qualitative Research in Psychology, 20(1), pp.121-154. 10 PAGE 57 anything that relates to an interview could be traumatic medical examination’ – Health Professional (Online Workshop). Indeed, explicitly embedding such a trauma informed approach might also reassure ethics committees of the approach taken by researchers working with vulnerable populations, as well as indicating to community groups that the research team is alert to ensuring a meaningful level of awareness and engagement with the concerns of refugees and asylum seekers. In turn, this explicit foregrounding of trauma-informed approaches may reduce some of the barriers associated with seeking participation via civil society/community gatekeepers, as identified earlier in this report. 3.3.2 Solutions for Increasing Health Professional Cultural Awareness During both the health professional and community workshops, there was a consensus regarding the necessity for enhanced cultural awareness training for health researchers engaging with refugee and asylum-seeking communities. It was suggested that training for researchers should encompass a recognition of power imbalances, information sharing techniques and how to navigate gaps in communication, cultivating an awareness of privilege and an understanding the nuanced dynamics inherent in research interactions. One community member suggested, ‘So, trying to equal out actual or perceived power imbalance is really important. So, by building this relationship whether it’s, “Oh I visited a country…” maybe close by or similar, or “I felt really vulnerable when I visited such and such a place,” or, “You know, I can cook a recipe from your country.” Whatever it is to reduce a power imbalance is great’ – Community Participant (Peterborough Workshop) Participants stressed the importance of gaining deeper insights into the diverse experiences within refugee and asylum-seeking communities, challenging the notion of homogeneity often ascribed to them. ‘People want their staff to know about cultural awareness. When they're dealing with different customers from different countries, what is acceptable or how to approach stuff. I think for researchers, that would be really important, to know about the people that they're speaking to, PAGE 58 what their expectations are, what their customs are, so they don’t offend, and they get the best from them’ – Community Participant (Cambridge Workshop) Participants collectively agreed that they thought addressing their personal lack of cultural awareness would require concerted and determined efforts to enhance researchers' cultural competence. This could occur through targeted training programmes, attending workshops delivered by community partners and civil society, and ensuring relevant high-quality resources are made widely available. Health professionals expressed a desire for additional, regular, and upto-date training opportunities which take account of recent migratory flows or emergent issues (rather than limited training on FGM as noted at p.42). Researchers suggested that these materials be co-designed in collaboration with the communities and civil society organisations themselves, ensuring authenticity, relevance, up-to-date information, and inclusivity. ‘We can’t accommodate for everybody all the time - who's coming from where, what their background is, to provide training. But I think a bit more training around being open to learning from each individual we come across would probably help. I think that's about being inclusive, being there. Recognising intersectionality, that everything's going to multiply. If you are a different colour, you are already facing a few barriers. If then perhaps you're gay, that goes on top of it we need to teach people this’ – Health Professional (Cambridge Workshop) Additionally, the health professionals who participated in workshops, interviews or who joined in conversations as part of the scoping activities, repeatedly suggested the creation of a centralised online resource to support their understanding of diverse communities and guide them through best practices when engaging refugee and asylum-seeking communities in research. One clinical researcher noted: ‘There is a need for, nationally, more detailed guidance about what is best practice when consenting someone whose English is their second language etc.? And putting something together that then actually, people can go to, and you can develop training around those standards and say, “This is what we should be doing for these groups. This is the standard that you should be working towards”’ – Health Professional (Cambridge Workshop) PAGE 59 3.3.3 Solutions for Practical Issues In response to these challenges, health professionals proposed several solutions. These included facilitating meaningful but short-term engagement with individuals at the outset of their asylum journey which could be empowering and help to alleviate boredom for those in hostels, hotels, or large-scale dispersed accommodation settings. One participant explained that such activities would also allow individuals in transient asylum accommodation to have an opportunity to engage with research should they want to: ‘Although, my experience of the initial accommodations was that they're hugely grim places, but in terms of people wanting to engage... boredom is a huge factor. And therefore, actually, if you're going as a researcher and you're saying, “Okay, this is not a long-term engagement, but actually, we’re going to have a structured conversation with you and we’re going to engage you, and yes, we might offer you a meal. That is potentially a positive thing for someone to do at actually what is a stressful time and there’s nothing else to do in those centres’ – Health Professional (Cambridge Workshop) While health professionals emphasised the concept of financial or other remuneration, such as providing vouchers for participants without the right to work or be paid, or employing peer researchers who are legally employed; communities expressed a differing perspective. They suggested that monetary compensation alone might not suffice and proposed additional forms of support that would be more beneficial. These include assistance with childcare expenses for parents engaged as researchers or participants, as well as covering transportation costs. ‘A voucher doesn’t help with- [...] Childcare, car parks and that sort of thing, [...]’ – Community Participant (Peterborough Workshop) Community participants also emphasised the importance of transparency in the distribution of vouchers, coupled with clear explanations regarding their allocation, utilisation, and granting research participants’ agency in selecting the type of voucher that best suits their needs. This approach not only addresses practical considerations but also respects individuals' choices, including those related to ethical consumerism. Participants shared concerns about researchers' PAGE 60 assumptions that individuals should be content with whatever assistance they receive simply because they lack basic necessities. One participant stated, ‘There needs to be information about when they will get the vouchers. [...] Not just a vague promise and then just three months later, it may or may not be e-mailed and things like that’ – Community Participant (Peterborough Workshop) Another participant stated, ‘And we talked a bit about incentives as well. Obviously, compensation for people's time and inputs... in terms of expenses or appropriate vouchers and making it really sure they are the right kind of vouchers that people find easy to use or actually want. Not always Amazon vouchers or ones that require online accounts and things like that’ – Community Participant (Online Workshop) Participants also discussed the concerns of ethics panels where vouchers are involved. This was a focus of considerable discussion within the final stakeholder event where participants heard from the two ‘groups’ of participants. Community participants explained that assuming financial incentives to be the sole motivation for participation has potential to undermine individuals' agency. While some participants may indeed require monetary support, it is essential to recognise that they may also have a genuine desire to volunteer, contribute positively, and engage for personal reasons beyond fulfilling basic needs. As one community participant explained, ‘You’re not buying people with the voucher, they're not that cheap’ - Community Participant (Cambridge Workshop) It was also suggested that research grant application guidance /funding calls should as a matter of routine stipulate that applicants should describe how they will address barriers to participation for marginalised communities and demonstrate cultural awareness as a condition of accessing funds. It was suggested that this would allow for the allocation of more funds to well-planned, quality research focusing on depth rather than quantity, and facilitate support mechanisms for establishing robust longer-term connections with local community groups to foster mutual understanding and collaboration: PAGE 61 ‘I do think that funders really need to consider when they are putting out calls or funding projects that have this sort of element to it. I do think they need to allow additional time and funding for the additional issues that are going to come up as part of that project’. - Health Professional (Peterborough Workshop) Health professionals also recommended the necessity of guidance from funders regarding effective engagement strategies with minoritised communities allowing this to be an integral part of their application design. In recognition of the fact that not all researchers were familiar with how to operationalise PPI engagement effectively, they thought that guidance should encompass best practices for integrating community engagement, accompanied by information on associated costs and required researcher time. ‘Some guidance for people with this sort of information would be really helpful. So, they [researchers] can consider that when designing their trial and also that goes for the costing as well.... You have to put all of those costs in up front and a lot of us don't realise that all of these things factor in to engaging communities’ – Health Professional (Online Workshop) 3.3.4 Solutions for Language and Communication Barriers Health professionals emphasised the urgent need for improved training programs geared towards enhancing interpreters' cultural competency and empathy. ‘Could we have sort of like a national translation group... who are help ... either medical profession professionals or medically aligned/ clinically aligned [researchers] so that they understand the PAGE 62 context of the documentation they're talking about and having a whole host of cultural backgrounds and languages represented on a national sort of [research] translation service?’ – Health Professional (Online Workshop) All these proposed solutions, gained through the various elements of the consultation have been translated into an action plan, mutually discussed, and agreed within the final stakeholder event. PAGE 63 Section 4: Conclusion Our consultation with community representatives and researchers has uncovered a multitude of complex barriers that prevent and discourage refugee and asylum seeker involvement in health research. Through a deep, multi-method exploration which has interrogated and unpicked the intersecting ways in which these barriers to engagement combine, we have collaboratively proposed multiple possible solutions to these barriers. All our proposals have been examined and endorsed by representatives of communities (both refugees and asylum seekers and researchers) who experience these challenges. The recommendations (Section 5 below) forge a practical and realistic blueprint for overcoming these challenges and enable refugees, asylum seekers and health and social care professionals to work together in a radical, affordable manner which will change and transform the health research status quo. By co-designing the solutions with all the stakeholders concerned, we are confident that these solutions are both workable, practical and engage with seemingly intractable barriers which impact on inclusivity and thus effectiveness of clinical and health related research. Overall, as explored in detail above, we found that refugee and asylum seeker involvement in health research is hampered from the start by both their typically limited understanding and engagement with UK health services, and frequently negative experiences of attempting to seek medical care and treatment. Such negative experiences are often heightened by fear of authority, complex and arduous asylum processes, previous and current trauma, and concerns over interactions with state actors and agencies. Interactions with health and social care professionals can be fraught with anxiety, lack of understanding and communication problems which in turn creates a vicious cycle of mistrust and inability to participate in research, leading to their invisibility in clinical health research. This profoundly problematic basis is not an easy foundation on which to develop a sense of trust, and the possibility of engagement with health research processes. PAGE 64 In parallel to this, health and social care professionals were found to be deeply worried about their ability to effectively, and appropriately, engage with refugees and asylum seekers in a way which would avoid the risk of re-traumatisation, or that informed and freely given consent had not occurred. Researchers participating in our consultation were acutely conscious that their knowledge and understanding of the heterogeneity of migration journeys and situations, different asylum routes, legal status and cultural competency is limited and often lacking. They expressed their perceptions and experiences of the frequently difficult and frustrating encounters they had, both in research and clinical practice, where not enough has been done to support refugees and asylum seekers: for instance, with regard to inappropriate communications, poor quality interpreters and translation of documents or lack of knowledge about an individual’s history. Despite these complex, intersecting barriers, through collective dialogue, stakeholders were able to suggest many comprehensive potential solutions to addressing and overcoming such challenges, proposing workable solutions which in a way that makes sense to them. Fortuitously, many of the proposed solutions provided by community organisations, health and social care professionals and refugees and asylum seekers overlapped, evidencing validity, and providing genuine substance to prospects for their success. The fact that these have been proposed, discussed, and prioritised by all stakeholders involved in the project at multiple points, and collectively discussed during the final stake-holder event, provides confidence in the fact that solutions can meaningfully and effectively address the identified barriers through the mechanisms of robust and meaningful activities and processes. PAGE 65 Section Five: Recommendations In this concluding section of the report, we present the collectively agreed recommendations to inform and underpin future action planning. Since there were many findings pertaining to both community members and NHS professionals, it has been challenging to focus in on specific priorities and recommendations. The recommendations below contain the key elements agreed and scaled as priorities during the discussions within the final stakeholder event held in February 2024 considering feasibility and cost implications/opportunities to scale-up activities. However, it is acknowledged that this could be expanded, and that many other findings or recommendations could have been included. Policy recommendations Local mechanisms should be devised comprising input from refugee and asylum seekers (and agencies who support them) to actively feed into the work of the Integrated Care Boards across multiple relevant domains. In order to support Integrated Care Systems in ensuring mechanisms for representation of refugee and asylum seekers in research and engagement in services, it is critical to ensure that needs can be heard through a calibrated process which is both responsive and takes account of the multiple services which are the responsibility of the ICS. Research governance and oversight is clearly a key priority in the light of this report, but development of such a mechanism, committee or consultation process which may be scaled up from local level CPIBC piloted initiatives, should be flexible, responsive, and able to engage with changing cohorts of refugees and asylum seekers and routes of entry to the UK. Recommendations for health and care researchers and Professionals There is a key need for training for researchers and health professionals on all aspects of cultural awareness and the practical challenges facing Refugees and Asylum Seekers. PAGE 66 Such cultural awareness training will address the widely recognised need for better understanding of the refugee and asylum system, key aspects pertinent to the background and experiences of a number of different cultural groups (e.g. Afghans, Ukrainians and Hong Kongers) as well as specific issues experienced by all R/AS. These include fear and barriers to building trust, trauma-informed issues, and approaches to mitigating risk of re-traumatisation. Guidance on selecting and using interpreters appropriately and related issues are a core element of training. Such training will be developed in close collaboration with community members with lived experience of the asylum process, and civil society with intensive experience of working with such groups (e.g. CRRC, BRC and EELGA). Training will ideally also be delivered by people with lived experience alongside health professionals and experienced researchers. Appropriate remuneration is required for community members delivering or participating in training. Training should take place through either face-to-face (ideally) or online workshops. Such active workshop-based training will be complemented by a range of materials provided online for self-directed study which would include elements such terminology to use and avoid, cultural awareness, infographics on key issues, outreach engagement and research design mistakes to be avoided. Pertinent materials should be co-produced with community members and groups who support them to ensure they are relevant, up to date and appropriate. There is the potential here to create online self-study courses on themes of core interest to researchers and practitioners. In the first stages a website, or hub emerging from the EELGA website will be required to host such materials. In addition, and in response to importance of training frontline staff at locations where Refugees and Asylum Seekers access the NHS and to support building trust and removing barriers, the workshops and materials detailed above should also be designed and adapted in a format for use by NHS “gatekeepers” such as GP receptionists/front-line staff. Once again, these materials would be developed with the community members and groups. Interactive events (face-to-face or online) would be delivered by these groups and trained PAGE 67 community members. Materials for gatekeepers will include trauma-informed approaches and the use of interpreters. Given the emphasis on the way in which ethics committees can inadvertently have a blocking effect on research with refugees and asylum seekers; online guidance materials should be developed by researchers with experience in undertaking effective co-production with such populations for dissemination to ethic committee members, to support discussion and inform panel members about relevant research and engagement issues and how researchers can effectively, safely and ethically overcome barriers. Although our findings demonstrate that health professionals need simplified and effective routes to engagement with community groups working with refugees and asylum seekers, there is a risk of research requests overwhelming civil society agencies, and efforts should be made to manage such demand. For example, a list of community contacts who have expressed an interest in supporting research if appropriately remunerated and supported may be held by PPIE teams in universities and at ICS level. Researchers can then approach the PPIE lead to act as a broker to ask the organisation in question if they, and their network of refugees and asylum seekers would be interested in participating in a research project, and/or supporting development of funding applications. This would avoid community members or groups being approached directly by the researchers themselves supporting the development of trusting and sustainable relationships between the individuals/groups and the designated PPIE team. Such an approach will also enable PPIE teams to build up expertise on who to approach for a specific research project in order for the networking to be more targeted and effective. Please refer to the section below for recommendations for enhancing engagement with community networks. Recommendations for Community Members and Civil Society Agencies In order to build trust between health researchers and communities, a cohort of refugees and asylum seekers (and representatives from civil society agencies) should be trained as peer PAGE 68 researchers by university partners. In some circumstances such trained community researchers will be able to undertake direct data collection under the instructions of the health researchers but in other contexts may need to be accompanied by a researcher (for example if a skilled clinical researcher is required to undertake a particular intervention). Since the peer researcher will already have established community links and access to cultural knowledge, this will reduce fear of engagement and enable mechanisms for trusted engagement by refugees and asylum seekers, facilitating access to these groups. Trained and experienced researchers should provide mentoring and training which may (subject to validation) be accompanied by certification of the skills that the peer researchers have gained. Such training may be provided through the mechanisms of one-to-one skills audit, group or individual training sessions and could take place either face-to-face or online and be complemented by a bank of accessible resources for peer researchers to access. To seek collaborative, supported opportunities for the involvement of people with lived experience (refugee/asylum seeker) in ICS-wide decision-making processes including (but not limited to) those pertaining to health and care research and service design and provision. Engaging with such opportunities may include working with Healthwatch, participating in an ICS level PPIE forum; research engagement networks (REN) or research advisory groups. There is scope for trained and mentored community members to volunteer as Refugee and Asylum Seeker research champions (NIHR, 2024). Undertaking such a role will support research engagement with these communities and enable the individual to act as a trusted and informed intermediary between communities and researchers. The Strategic Migration Partnership at the East of England Local Government Association has previously produced a short, 10-hour curriculum for Refugees and Asylum Seekers on “How to use the NHS”. This programme, delivered via civil society agencies aims to increase understanding about how the NHS works in comparison to such services in other countries and covers such topics as registering and making appointments with a GP and dentist, access to emergency healthcare, vaccinations, perinatal health services, eye tests, lodging complaints and requesting interpreters. PAGE 69 The “How to use the NHS” curriculum can be adapted to include references to health research and the benefits of participating in such research. The curriculum will be provided to community organisations for them to further adapt and teach as appropriate within their context. It can be taught online or face-to-face. Our findings have evidenced that recent arrivals to the UK are not in a position to engage with research and researchers, until they have become more established in the UK and familiar with processes and stabilised their situation. Therefore, new communication materials targeted at Refugees and Asylum Seekers should be aimed at individuals whose situations permit them to meaningfully engage with research. Such introductions to research should explain what research is and the benefits of participating for the individual, their own community and society as a whole. Community organisations should be involved in producing these materials as well as distributing them when appropriate and a range of community languages and formats (e.g. vlogs, audio, infographics) will be utilised. Outputs will be designed for maximum replicability/adaptation for different audiences. To make the interaction with health research less transactional and to reduce power imbalances, it is beneficial for health researchers and clinical professionals to interact with the various Refugees and Asylum-Seeking communities on a regular basis. This will again increase trust and familiarity between the two groups. It would also meet the key need of Refugees and Asylum Seekers and civil society agencies for building longer-term meaningful relationships. Such engagement activities could include welcome events for new arrivals, drop-in sessions with health professionals (e.g. basic health checks, workshops on long-term conditions like diabetes) and periodic events across the ICS that celebrate different cultures. Participation in such events should be remunerated and recognised, for example by provision of a certificate or gift voucher for those refugees and asylum seekers who choose to engage. At a deeper level, a process for building reverse mentoring relationships between civil society agency volunteers or staff with lived experience of the asylum process and health professionals, to sensitise researchers and others to the issues experienced by communities is of potential value. Such reverse mentoring could take the place of supporting identified individuals with lived PAGE 70 experience to engage on a bi-monthly or semi-regular cycle with researchers and health professionals who are working with or wish to work with refugees and asylum seekers. Such mentors must be appropriately remunerated. In addition, networking conferences and other events provide excellent and cost-effective opportunities to support engagement between researchers and individuals with lived experience, such events promote contacts between researchers, organisations, and individuals to provide information sharing, gather data, share ideas, training and potentially offer CPD opportunities for health care professionals. Refugees and Asylum-Seeking community members will be remunerated for their participation with gift vouchers or an appropriate fee to represent the time they have spent engaging and supporting such events. 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PAGE 75 Appendices Appendix A - Call for evidence Call for Evidence 15th of November 2023 Project: Breaking down barriers to research participation for refugees and asylum seekers: triangulating the experiences of people with lived experience, civil society and statutory service providers, and health and social care researchers. This project focuses on the two-way systemic barrier to research participation by refugees and asylum seekers (R/AS) of their own knowledge and understanding and that of health and care professionals and researchers, along with experiential factors that potentially exacerbate this challenge. Using co-production and collaborative techniques, we will explore system barriers to research engagement of R/AS at different stages of their post-migration journey based on their knowledge and understanding and that of system actors. This is a multi-agency collaboration of ICB representatives, civil society organisations supporting refugees and asylum seekers (R/AS), the East of England Strategic Migration Partnership (Local Government Agency), people with lived experience as refugees or asylum seekers, and health / social care researchers in Cambridgeshire and Peterborough. This project is funded under Cohort 3 of the ICS Research Engagement Network (REN) development programme, funded jointly by NHS England and the Department of Health and Social Care (DHSC). The collective aim is to increase the numbers of people participating in research, to ensure that the diversity of people taking part will ensure that research is more representative of our diverse populations and that communities are more actively involved in shaping the future of local health and care. This call for evidence is to enable the identification of good practice through projects working with refugees and / or asylum seekers in health-related research. Anyone who has worked on projects/initiatives relating to this area or has any data/reports available is invited to contact: Dr Chantal Radley at Anglia Ruskin University at [email protected]. PAGE 76 Appendix B – Board games: Snakes and Ladders Game and Identity Cards PAGE 77 PAGE 78 Appendix C - Agenda for the Final Stakeholder Event Building a Pathway to Participation: Final Stakeholder Event 29th Agenda February Alia Centre, Peterborough 10am-4pm Arrival and refreshments from 9.45am Welcome and Introduction Professor Margaret Greenfields Health Research and REN Dr Philippa Brice Project Outline and Findings Dr Chantal Radley/Prof Greenfields Breakout Discussions: Identifying solutions to the problems Feedback and group discussion Farsh Raoufi, EELGA 10 10.10 10.20 10.45 11.30 Lunch 12.00 Moving Forwards: Developing a practical, feasible and accessible Action Plan Breakout Discussions: Determining recommendations for Action Plan Feedback and group discussion Gill Searle, EELGA 13.00 13.15 14.00 Break and refreshments 14.45 Panel and audience discussion – deciding recommendation priorities Next Steps and Close Professor Margaret Greenfields 15.00 15.45 PAGE 79