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

Research Inclusion, Design, Participatory, Ethics, Equity, Learning, Marginalised-Excluded, Improve Policy/Practice ALL Metrics - Views Downloads How to cite this article Bhui K, Mooney R, Stepney M et al. Improving Research Inclusion: learning from NIHR and Research Council funded studies in England [version 2; peer review: 2 approved with reservations, 1 not approved]. NIHR Open Res 2026, 5:102 (https://doi.org/10.3310/nihropenres.14116.2) NOTE: If applicable, it is important to ensure the information in square brackets after the title is included in all citations of this article. Export Citation Sciwheel EndNote Ref. Manager Bibtex ProCite Sente Select a format first ▬ ✚ Review Revised Improving Research Inclusion: learning from NIHR and Research Council funded studies in England [version 2; peer review: 2 approved with reservations, 1 not approved] Kamaldeep Bhui https://orcid.org/0000-0002-9205-2144 1-5, Roisin Mooney1,2,4, Melissa Stepney https://orcid.org/0000-0001-8743-9443 1,2, [...] Kanwal Mand https://orcid.org/0009-0006-7558-3222 6, Megan Kirk https://orcid.org/0000-0002-2069-2177 1,2, Erin Lawrence https://orcid.org/0009-0001-8311-4948 5, Anna Lavis6,7Kamaldeep Bhui https://orcid.org/0000-0002-9205-2144 1-5, Roisin Mooney1,2,4, [...] Melissa Stepney https://orcid.org/0000-0001-8743-9443 1,2, Kanwal Mand https://orcid.org/0009-0006-7558-3222 6, Megan Kirk https://orcid.org/0000-0002-2069-2177 1,2, Erin Lawrence https://orcid.org/0009-0001-8311-4948 5, Anna Lavis6,7 PUBLISHED 14 May 2026 Author details Author details 1 Department of Psychiatry, University of Oxford, Oxford, England, UK 2 NIHR Oxford Health Biomedical Research Centre, Oxford, England, UK 3 Wadham College, University of Oxford, Oxford, England, UK 4 World Psychiatric Association Collaborating Centre, Oxford, England, UK 5 Centre for Psychiatry and Mental Health, Wolfson Institute of Population Health, Queen Mary University of London, London, England, UK 6 Dept of Applied Health Sciences, University of Birmingham, Birmingham, England, UK 7 Institute for Mental Health, University of Birmingham, Birmingham, England, UK 2 NIHR Oxford Health Biomedical Research Centre, Oxford, England, UK 3 Wadham College, University of Oxford, Oxford, England, UK 4 World Psychiatric Association Collaborating Centre, Oxford, England, UK 5 Centre for Psychiatry and Mental Health, Wolfson Institute of Population Health, Queen Mary University of London, London, England, UK 6 Dept of Applied Health Sciences, University of Birmingham, Birmingham, England, UK 7 Institute for Mental Health, University of Birmingham, Birmingham, England, UK Kamaldeep Bhui Roles: Conceptualization, Data Curation, Funding Acquisition, Investigation, Methodology, Project Administration, Resources, Supervision, Writing – Original Draft Preparation, Writing – Review & Editing Roles: Conceptualization, Data Curation, Funding Acquisition, Investigation, Methodology, Project Administration, Resources, Supervision, Writing – Original Draft Preparation, Writing – Review & Editing Roisin Mooney Roles: Funding Acquisition, Investigation, Project Administration, Resources, Supervision, Writing – Review & Editing Roles: Funding Acquisition, Investigation, Project Administration, Resources, Supervision, Writing – Review & Editing Melissa Stepney Roles: Conceptualization, Investigation, Methodology, Project Administration, Writing – Review & Editing Roles: Conceptualization, Investigation, Methodology, Project Administration, Writing – Review & Editing Kanwal Mand Roles: Conceptualization, Data Curation, Investigation, Methodology, Project Administration, Writing – Review & Editing Roles: Conceptualization, Data Curation, Investigation, Methodology, Project Administration, Writing – Review & Editing Megan Kirk Roles: Conceptualization, Data Curation, Investigation, Methodology, Supervision, Writing – Review & Editing Roles: Conceptualization, Data Curation, Investigation, Methodology, Supervision, Writing – Review & Editing Erin Lawrence Roles: Data Curation, Formal Analysis, Methodology, Project Administration, Writing – Review & Editing Roles: Data Curation, Formal Analysis, Methodology, Project Administration, Writing – Review & Editing Anna Lavis Roles: Conceptualization, Funding Acquisition, Methodology, Project Administration, Supervision, Writing – Review & Editing Roles: Conceptualization, Funding Acquisition, Methodology, Project Administration, Supervision, Writing – Review & Editing OPEN PEER REVIEW REVIEWER STATUS Research Inclusion (RI) seeks to improve the inclusion and participation of marginalised groups with significant health care needs in research. However, research programmes are known to under-recruit individuals with multiple health problems, those facing health inequalities, and those living in precarious social situations where stigma and discrimination. 1 Although RI strategies are likely to vary by health conditions, research designs, the method of data collection, venues for data collection, and the nature and complexity of interventions, there is little practical information for researchers on how do to this. In this paper, we synthesise insights and lessons learnt from a range of research programmes in England to identify effective approaches to RI. These include studies of adolescents living with adverse childhood experiences in complex intersectional positions of vulnerability; studies of ethnicity and multimorbidity including psychosis; and research to improve public and patient involvement with ultra marginalised adolescents. The research projects sought to ensure representation of, participation by, people with lived experience, and from the most marginalised groups facing multiple forms of vulnerability. We conclude that inclusion strategies must continually evolve from the inception of research and during the delivery of the research; address power imbalances and strengthen trust through co-design and participatory methods; build community partnerships and networks of trusted organisations; adapt research infrastructures that may act as barriers to participation; ensure culturally responsive designs in order to tackle epistemic injustices when certain voices or types of knowledge are ignored. 2 Research studies should explicitly define which marginalised groups they aim to recruit, secure the necessary resources to flexibly involve people living in unexpectedly complex circumstances, revise procedures for participation and retention, transparently report successes and failures, and generate recommendations for future studies. We place our learning in the context of published literature and propose a research inclusion checklist. Research is important as it informs the development and adoption of new care and treatments. However, many people are not included in research. This occurs if their complex health problems and social situations prevent them from following the procedures by which people are recruited into research; they may have more immediate social and health care needs, or their complex conditions may be the basis of exclusion if researchers are studying a single condition. People likely to be excluded include older people, younger people those with multiple health problems and frailty if there are not sufficient resources to support them into research; and then there may be concerns about how to undertake research safely, for example, if people have experienced traumatic events and the research might make them feel distressed or unsafe. People from marginalised groups, by age, sex, sexuality, ethnicity, neurodiversity, socio-economic status and poverty, and place; therefore, these groups end up being excluded from research so that advances in care and treatment are not informed by their views. Given the are already most likely to face disadvantage and poor care and access, this makes their situation worse, as they do not benefit from advances. In this paper, we look at these issues through the lens of four research projects that are underway or nearing completion, and we summarise these lessons we learnt in practice, for how to improve research inclusion. The studies sought to learn about and provide support to young people (12-24) with adverse childhood experiences (The ATTUNE study), adults with multiple chronic conditions including a psychosis (Co-Pics and a PhD study in East London recruiting a similar group), and work from Leeds and Falmouth with ultra marginalised young people to understand what think of participating in research and what gets in the way. The studies were each fully funded, through bodies like United Kingdom Research Innovations through the Medical Research Council and various funding streams from the Nation Institute of Health Research. In this paper, we do not set out the full methods of each of the studies as these are reported elsewhere, rather, we try to set out the learning on how we had to adapt our approach and what worked well and what did not. This information is often not included in the main research paper. Although there is a lot of guidance, very little gives the practical information we discovered. We summarise it here and link it to research, where the approach appears be close to or similar to our discoveries. We also explain the challenges in doing such work, especially for universities and funders and researchers who find changing their procedures challenging. Research Inclusion, Design, Participatory, Ethics, Equity, Learning, Marginalised-Excluded, Improve Policy/Practice Corresponding Author(s) Kamaldeep Bhui ([email protected]) Grant information: This paper was inspired by research inclusion strategies developed in the design and delivery of the following research projects: ATTUNE funded by UKRI programme on Adolescent Mental Health and the Developing Mind (MR/W002183/1), Co-Pics NIHR Health and Social Care Delivery and Research Panel (NIHR151887), London Interdisciplinary Social Science Doctoral Training Partnership (LISS-DTP) PhD Studentship (grant number ES/P000703/1) ; Oxford Health NIHR BRC’s Developmental and Preventing multimorbidity themes. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Copyright: © 2026 Bhui K et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. How to cite: Bhui K, Mooney R, Stepney M et al. Improving Research Inclusion: learning from NIHR and Research Council funded studies in England [version 2; peer review: 2 approved with reservations, 1 not approved]. NIHR Open Res 2026, 5:102 (https://doi.org/10.3310/nihropenres.14116.2) First published: 16 Oct 2025, 5:102 (https://doi.org/10.3310/nihropenres.14116.1) Latest published: 14 May 2026, 5:102 (https://doi.org/10.3310/nihropenres.14116.2) The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. The revision takes account of the reviewers' comments. A detailed response to review is available. Broadly we have revised the abstract and the plain language summary. We have set out this is not primary research but a narrative summary of lessons learnt across four research projects in England. We include additional contextual literature, and explain more fully the relationship between conventional PPI and Research Inclusion as an extension of PPI. We include a supplementary table of PPI within each project, and briefly mention this in the paper, but the paper itself was produced by researchers, summarising lessons for other researcher. We have included additional points in the 'lessons' learnt section and carefully explain the limitations of the checklist and how it might be further developed. Throughout, we have tried to simplify the language and sentence structure. We think the paper is much better and thank the reviewers, looking forward to their comments on the latest version. Given so much has been revised, we are happy to provide a clean version alongside the tracked version. The revision takes account of the reviewers' comments. A detailed response to review is available. Broadly we have revised the abstract and the plain language summary. We have set out this is not primary research but a narrative summary of lessons learnt across four research projects in England. We include additional contextual literature, and explain more fully the relationship between conventional PPI and Research Inclusion as an extension of PPI. We include a supplementary table of PPI within each project, and briefly mention this in the paper, but the paper itself was produced by researchers, summarising lessons for other researcher. We have included additional points in the 'lessons' learnt section and carefully explain the limitations of the checklist and how it might be further developed. Throughout, we have tried to simplify the language and sentence structure. We think the paper is much better and thank the reviewers, looking forward to their comments on the latest version. Given so much has been revised, we are happy to provide a clean version alongside the tracked version. To read any peer review reports and author responses for this article, follow the "read" links in the Open Peer Review table. Research programmes are known to under-recruit those with multiple health problems, facing health inequalities, living in precarious social situations, or where their identity can be a source of stigma and discrimination.1 Research inclusion (RI) refers to active and intentional efforts to ensure that people from a wide range of backgrounds and social contexts can both shape and participate in research. This add strengthens to: This strengths equity ... equity, which we consider to be mediated by a) representative research studies in which people’s opinions are heard and given weight; b) research designs that adapt to support needs. Together, these ensure that emerging evidence around care and new complex interventions and policies are more effective and lead to fair impact and improved health outcomes. RI ensures effective partnerships help represent and engage people from diverse backgrounds; with sufficient resources to involve them in a meaningful and safe way in research design and delivery.3 RI reduces the potential for neglecting representation in research, thereby combatting practices that perpetuate or worsen health inequalities.3 We propose diverse perspectives must be represented (for example, by age, sex, gender, ethnicity, neurodivergence and disability) to improve critical reflection on research questions and scientific designs. Involving different disciplinary perspectives also helps to innovate by challenging assumptions and paradigms and refocusing the scope of inquiry to areas of importance to the public and patients. This makes the research more generalisable, for example, to global majority populations (over 80% of the world’s population).4 The emphasis on protected characteristics (in British legislation) is valuable.5 The Equality Act (2010) specifies age, disability, gender reassignment, marriage and civil partnerships, pregnancy and maternity, race, sex and sexual orientation as protected characteristics. NIHR (National Institute of Health and Care Research) is the biggest funder of health and social care research in the UK and has mandated RI; NIHR also asks for attention to socioeconomic status and inequalities, caring responsibilities, multiple vulnerabilities due to identity and social position, geographical location, and unequal access to health and social care.6 Many standard categories used in RI strategies (e.g. ethnicity) neglect heterogeneity within the categories, and risk obscuring more complex vulnerabilities due to multiple forms of disadvantage and ever changing and dynamic combinations of identity and social position. Vulnerabilities to poor health can reflect interactions between multiple additional markers of social position, for example, social class, tribe, caste, migration or asylum status. These intersections of identity and social position need intentional inclusive approaches.7 Recent reviews show considerable variability in how equity dimensions are reported in research, highlighting the need for clearer guidance and consistent use of frameworks.8–10 Consequently, routine data or surveys that do not critically consider identity and vulnerability categories cannot deliver findings of relevance to those most likely to need care and those who should benefit from research. Vulnerabilities to poor health can reflect interactions between multiple markers of social position, for example, social class, tribe, caste, or geographical location, migration or asylum status. Health inequalities are more often encountered among disadvantaged groups,5 the very groups that are under-represented in research that informs practice and policy, which then turns out to be only suitable for groups able to participate in research.11 As a result, emerging innovations do not serve those with most needs and interventions developed from biased samples will not be taken up by the most marginalised, requiring further studies, expense, and later adaptation of interventions and policies. Although many funders and research institutions increasingly advocate for RI, practical guidance on how to achieve this remains limited, even across established participatory traditions. Many formal accounts tend to leave out ‘messiness’ and complex situations that unfold during the research, often unexpectedly; these situations are often seen as frustrating deviations from protocol rather than holding information on how to be more inclusive in research practice. Therefore, formal reports may may present an overly optimistic view and downplay difficult issues surrounding RI, either because they are judged as failures or as exceptional events unlikely to occur again. We present authentic, real-world experiential insights from existing research programmes, contextualised by relevant literature, in place of a systematic review or primary empirical research. A narrative non-systematic review of relevant studies and expertise from experience is appropriate for fields of inquiry where the evidence is sparse and rapidly evolving, and where it is complex and not easily captured in formal systematic literature searches.12 Some research methods such as co-production, trauma-informed research and participatory research do share common aims with RI, including promoting equitable involvement, addressing power dynamics, and supporting meaningful participation of marginalised groups, whilst also placing specific emphasis on removing institutional and procedural barriers and constraints with involvement. Building on and complementing these approaches and debates across co-production, community-based research, and trauma-informed methodologies,13–16 this paper assembles learning from several research projects to articulate practical methods for strengthening RI in health research. Against this backdrop, we share the learning from four recent projects: 1) Research from the Mental Health in Development and Preventing Multimorbidity Themes of the NIHR funded Oxford Health Biomedical Research Collaborative (NIHR BRC), including a study recruiting people with severe depression into a ketogenic diet trial and research to improve inclusion methods for ultra-marginalised adolescents in Cornwall, Birmingham, and Leeds. 2) A NIHR Health and Care Services Delivery (NIHR HSDR) funded study, which sought to recruit people with at least two or more multiple long-term conditions and psychosis (Co-Pics )17 in several urban and semi-rural areas in England. 3) An ESRC funded doctoral student project recruited people with psychosis and physical multimorbidity in East London, building on the methods of Co-Pics. 4) Finally we include learning from a United Kingdom Research and Innovation (UKRI) funded project on the use of creative arts methods for understanding and responding to adverse childhood experiences (ATTUNE), recruiting young people aged 12–24 in several rural, urban and coastal venues.18 This was part of the Adolescent Mental Health and the Developing Mind (AMHDM) programme at UKRI. Each of the study designs and cohorts are (as cited) or will be separately reported. Therefore we do not present detailed research protocols. Rather, we present here an overview of RI approaches that we evolved before and during the studies in response to challenges (see Summary of RI Challenges). These observations were derived through deliberations within our research teams, our advisory boards, and our PPI groups in the research design and delivery. Most of these studies included early participatory or creative elements, such as photovoice, multi-modal arts work, or narrative methods (ATTUNE, Co-Pics). These are known to enable greater participation by those less able to use verbal methods, or where conventional research designs might be off putting or felt as traumatic. A relational recruitment procedure involved working closely with local research teams and trusted community partners (ATTUNE, Co-Pics, NIHR OH BRC). The emergent lessons (see RI Checklist) were derived from the experiences of the researchers, peer researchers, and community partners, staff supporting recruitment from NHS research infrastructures and NHS Trusts, during recruitment of participants from diverse and marginalised positions. The recommendations may assist research organisations, NHS teams, charities, and local communities to build appropriately agile and equitable research infrastructures and commensurate skills. In this paper we summarise the learning from these four projects, rather than report fully the PPI arrangements of each project. However, we briefly describe the PPI approaches here, and we consider the relationship between PPI and RI (see Table 1). In ATTUNE young people with lived experience participated in the funding application and design, and in the delivery of each component, including deliberations on ethics, and in the interpretation and writing up of results. They were represented in the overall advisory board, local and national advisory groups, and within specific research gatherings and interpretation processes. In Co-Pics and the related PhD project (both still being written up) on multiple long term conditions including psychosis, people with lived experience reviewed and contributed to and were involved in the application for funding, in the data collection, and will be involved in interpretation and writing up. In Co-Pics the advisory board included lived experience and a co-investigator on the funding application was a lived experience expert. In the BRC themes on Preventing Multimorbidity and the Youth Development, we worked with lived experience experts with the relevant experiences and conditions to inform how we should undertake research; in these studies we devised the engagement and involvement plans after making contact with potential participants, centring on flexibility and local and group specific adjustments in our approach. Lived experience experts were and will continue to be involved in interpretation of the data. The projects mostly followed an experience-based co-design methodology, so were not experimental studies or trials. The co-designed interventions are being or will be evaluated in the future. Where we used outcome measures in ATTUNE, which were recommended by the funder to promote comparison across studies, they were also reviewed and critiqued by young people’s panels, to inform selection, modification and presentation of questions. For this paper, we did not establish a separate PPI group, although we shared a summary of the paper for input and our checklist was scrutinised by a panel of five young people, who ranked the items in order of importance. The conduct of research is often shrouded in technical terminology, either reflecting specific methodological paradigms or disciplinary framings of the problem that the researchers seek to solve. Esoteric or technical language is sometimes necessary, linked to theory to help us advance science, or for communication between people sharing the same theories, concepts and vocabulary. However, language can act as a barrier to inclusion.19 For example, on interrogating concepts like personality disorder, disease or illness, or ethnic group. Agreeing an accessible vocabulary and explanations of causation often reveals unclear ideas or inconsistent definitions amongst scholars.20 Such questioning helps improve the precision of the language used and exposes traditions and conveniences that must be revised. These negotiations ensure partnerships are grounded in shared concepts and meaning from the start, and that there is agreement on how words that carry power are to be used. This enables influence over the research to be a reality from the beginning. Linked to language, once research is completed, the findings should also be accessible to the public, in a range of appropriate visual, audio, and sensory formats, beyond academic publications. For example, arts installations and exhibitions are an excellent vehicle for sharing research findings and for influencing practice and policy. We have provided photovoice exhibitions and arts exhibitions for the public and policy makers for ATTUNE, sharing young people’s art, soundscapes, animations and film outputs. Accordingly, we propose, RI can be more impactful if it encompasses not only study design and participation approaches, but also intentional designs of how the findings will be shared for wider knowledge dissemination into relevant communities and stakeholders. This adds value to the participants’ trust and enhances agency and ownership of their creative outputs and data (e.g. in ATTUNE and Co-Pics, respectively). We found this also helps to improve policy engagement, given creative outputs are known to be emotionally activating, more easily progressing to perspective-taking and consideration of options for future traction; rather than the traditional approach of providing research findings and expecting them to be valued and actioned by others facing multiple implementation barriers. Personal sharing of findings by potential beneficiaries also carries more weight. As another example, many young people in ATTUNE presented to parliamentarians and produced briefings for parliamentary consultations, informing emerging policy in real time. RI seeks to democratise knowledge and show what research is being done for public accountability. Greater involvement of those who would not usually participate in research can bring benefits to them.21 In our work with marginalised groups and with professionals delivering health and social care, it is always surprising how little of the research evidence is known. Therefore, any prior assumptions of what is known or not across participants in co-design and participatory methods should be questioned. Providing evidence summaries early in the process, again in multiple modalities, can help balance power as participants can challenge the prevailing evidence, what it means, and what it is based on. This helps to optimise trust and communication, and promotes early discussion; such a process also sets out shared and non-shared basic assumptions of group process, including exploring communications and collaboration and complex interdisciplinary dynamics.22 The design and delivery of research, and the ways in which research findings are shared, when informed and shaped by the beneficiaries of research, ensure that the presented findings are relevant, ethical, and more likely to be adopted for practical impact.23,24 Epistemic injustice refers to people’s views being dismissed because of a specific identity characteristic such as a diagnosis, their identity (for example, ethnicity), or both (testimonial injustice). Their views might also be dismissed through biases in knowledge production methods leading to a failure to produce fair and representative accounts (hermeneutic injustice).25 Through dialogue, with participants and intended beneficiaries and co-designed collaborative processes, knowledge production can address epistemic injustice. This should ensure that the public and participants come to trust the research process and consequently the later findings.26 Participatory RI can identify research questions of importance to the public and patients, alongside refining or challenging those proposed by funders and professionals. However, an equally important function is to critique or to deprioritise questions or procedures that might reinforce stigma and prejudice, or halt research interests that are too far removed from patient experience. Such critique can prevent wasting resources on unhelpful approaches. A shift to find solutions to research problems (agree vocabularies, recruitment, representation, ethical dilemmas) during the research requires time to explore and progress and may be viewed as demanding and costly. Therefore additional resources (time and funds) should be anticipated in the research design and funding application.2 Consequently, implementing RI can be experienced as disruptive of conventional research pipelines, but this is necessary to shift power away from research teams and standardised procedures of exclusion, towards the interests of beneficiaries. Given the risk of epistemic injustice for marginalised groups, championing their needs and advocating for better RI should fall to the research team. We found a re-think was often required in response to poor recruitment; hence, pausing at these moments offered valuable opportunities to review research designs and underlying procedural, practical, philosophical and theoretical confusions and assumptions. Cultural and linguistic adaptation, for example, may be revealed to require more intensive effort. Lived experience perspectives often helped uncover these assumptions and provided guidance on when the adaptations we pursued were adequate. In our approach to inclusive research practice, we made use of participatory methods, emphasising co-design and collaboration with the intended beneficiaries from inception.27 However, participatory methods are seldom used or fully reported in health research, and even when they are reported, this may not permit replication given there are no widely agreed reporting standards.28 Co-designed and collaborative research contrasts with traditional approaches found in hierarchies of clinical evidence (trials and systematic reviews being considered the most valid approaches); funding priorities and study designs are usually determined by governments, think tanks, charities, and learned societies and researchers based on these traditional hierarchies. Such an approach, unhelpfully, locks in a particular design, rather than allowing researchers to respond to the ongoing and necessary re-design and newly discovered support needs of potential participants to ensure meaningful participation. Another benefit of co-design and participatory methods is that these enable those undertaking research to reflect on and adjust research procedures and create a team culture in which lived experience is central to discussions and processes. For example, in ATTUNE, young people impacted by adverse childhood experiences were involved in the creation and interpretation of research findings with the investigators. In Co-Pics, peer researchers received skills training, undertook biographical narrative interviews and will be included in analysis and interpretation. In ATTUNE, we also adjusted the way advisory board meetings were run, including briefing young people before the meetings, providing accessible summary materials before and during meetings, and using fonts and colours that maximised accessibility to those with reading difficulties or neurodivergences. An additional benefit of participatory approaches is that those expected to implement findings and wider public stakeholders become more informed of what matters to the intended beneficiaries, and what really is at stake for them.29 This prepares and motivates them for implementation. For example in ATTUNE, creative art was emotionally activating for both the research team and policy makers; and at the same time it presented young people’s experiences, centred on their agency, and in a positive manner, emphasising their creativity as a strength. Moreover, co-design reduces power imbalances as stakeholders become more familiar with working alongside each other and directly with the intended users of the research. This prepares them to champion the implementation of research and anticipate which local regulatory and governance procedures need activation. Wider structural barriers that prevent use of health and social services can be replicated in research institutions. Innovative models can relocate research processes into community venues, ones that are more familiar to and trusted by participants; however, this means improving the infrastructure for research in the community in recognised safe spaces such as schools, charities, museums and art galleries.30 Research inclusion often brings structural and procedural barriers to the fore, generating ethical questions and dilemmas when designing and delivering research. Adopting RI means upholding an ethical responsibility to ensure justice and fairness in research, where all groups have an opportunity to benefit from advancements in science, rather than a privileged subset. Globally, ethical dumping (the practice of researchers from high-income countries conducting unethical or exploitative practices in lower income countries) and helicopter research (research teams entering and leaving communities after the research is completed without considering the impact on the community) are being challenged and must be rigorously avoided and managed.31 One way to combat ethical violations is to ensure research processes to recruit participants and deliver research are developed with and subject to critique by intended beneficiaries.32 Oversight committees need to be attentive to potential unanticipated ethical dilemmas and see these as an opportunity to learn. For example, in ATTUNE, we designed participatory methods involving multiple modalities of creative arts and communications (verbal, audio, video, sensory) and different approaches to co-design; this was time consuming and required thoughtful and sensitive engagement with the intended beneficiaries throughout. This posed many ethical questions around wording and presentation that were addressed through participatory deliberative processes.33 These were especially helpful if there were sensory challenges or difficulties with literacy or verbal ability. Such approaches may be less familiar to funders, researchers and ethics committees.34 Therefore, an important task is to explain and upskill such committees35; this is additional work that researchers must undertake and so the timelines and costs should be considered for progress milestones to be realistic and achievable. There are many other examples of how research needs to be adapted to respond to ethical questions. Adequate support is required for people to enter research, especially if potential participants are frail, vulnerable, or have experienced lifetime adversity and unfavourable socio-economic conditions; this requires more time to assess what kind of support is needed and to build trust. Participants will need more support than is usual during and after the research. It is relatively easy, in our experience, for such groups to be systematically excluded by tight inclusion criteria or when the research infrastructures and recruitment teams do not have capacity to provide the additional necessary support. Judgements about suitability may carry inherent prejudices about an individual’s desire and ability to participate, especially when relying on busy clinicians or others working in health systems who are not directly involved in the research but are assisting with recruitment. These matters are often compounded by poor communication of the research aims and what participation involves, especially with novel participatory designs which are open to misunderstanding and misinterpretation. Most research activity follows standardised operating procedures especially for trials, therefore novel co-designed and participatory designs may be questioned or mistrusted by potential participants and generic recruitment teams. These too may unevenly impact specific groups, such as women, and require resources and time. People experiencing poverty, mobility issues, disabilities, as well as multiple health conditions may require more time in travelling, flexibility in entering and leaving research, and resources (for example, taxis may be required rather than public transport). There may also be child-care needs to permit participation. These too need resources and time. People with carer responsibilities need support during the research process, especially if they are managing multiple social challenges like paying fuel bills, living in rural or distant areas, and if they need to prioritise immediate health and welfare appointments over research (for the person they are caring for or themselves). For young people with care experiences or those living in vulnerable, chaotic or precarious situations, there are additional ethical complexities that require careful consideration. They may struggle with lengthy consent procedures36 and may not wish to discuss research participation with parents or carers. Whilst researchers and regulators insist on assurances of uniform informed consent processes and of confidentiality, young people living in such precarity will be excluded, risking neglect of their significant health, welfare, and social care needs. In addition, if they have troubled and chaotic lives, young people may not be able to participate in tightly scheduled research, or in a consistent manner. Research should also not assume levels of literacy or ability to express experiences verbally; for example, many struggle to complete questionnaires that require significant periods of concentration, and ones which ask about deficits or traumatic exposures such as maltreatment that may be distressing. Depending on the timing or nature of the traumatic event, it may be difficult to recall. Again, the ethical dilemma is that such young people may be excluded, therefore, procedures and practices and ethical conventions may need to be revised. We engaged with social care organisation and local authorities who are usually responsible for safeguarding protocols and protections. The participation of social care leaders in research is a priority in the UK currently, yet this requires a larger infrastructure than is currently available. The use of incentives in research is often questioned, but for participants from poorer sections of society with multiple responsibilities and few assets, remuneration should reflect the time burden, and the emotional and cognitive demands involved in participation (e.g. for travel costs and time). Providing cash incentives may help, but can also compromise welfare and benefits, if the rules of welfare receipt specify limits to additional sources of income. Remuneration should also take account of time away from work, carer roles, and childcare costs. There are other examples of ethical challenges: young people may choose social media communications, or digital methods, which are often not deemed to be adequately secure and so these are not favourably viewed by data security, ethics or sponsor committees. Yet, if this is their preferred form of communication, it may improve representation, in part through building trust offering a more convenient form of easy communication. One of our studies used in NIHR OH BRC DIME used targeted social media adverts to reach a broad UK geographic region as well to recruit 300 participants in a few months (NIHR BRC), whereas for other studies (ATTUNE) this was deemed too risky and not supported. Consequentially, greater flexibility is required in governance procedures and protocols; greater (time) investment is needed for research teams to understand participants’ lives and how to adapt the pre-specified research infrastructure as a study proceeds. A phase of testing out different methods might helpfully be included in future research designs. Governance and assurance policies can become constraining and prohibitive, reinforcing structures of disadvantage. Therefore, we advocate for all research organisations and employers to review their policies and practices, on an ongoing basis, and perhaps even for each study, whilst evolving new procedures. Watchful attention to potential for improvement should be welcomed, rather than seen to challenge or violate protocols and standard operating procedures. Research Ethics Committees, Advisory Boards and Data Monitoring and Ethics Committees (DMEC) are part of the current expected governance infrastructure in the UK and along with sponsors determine what is considered acceptable; we found that raising the challenges and issues outlined at these committees led to productive opportunities to re-imagine inclusive research practice as studies proceeded. Practically, revising procedures requires ethical re-review which can delay studies if the governance processes are themselves not sufficiently well resourced to reflect the demands of inclusive research. Research teams will need to investigate these processes and consider the parameters of what is possible within resources (financial, research capacity and infrastructure). Patient and Public Involvement (PPI) is a widely accepted practice in health research, usually enacted through appropriate representation on advisory boards, in the development of new research ideas, sometimes with a presence in research teams, and through the design and refinement of recruitment strategies and materials to be put before participants. Resourcing PPI well, commensurate with objectives, can protect against tokenistic, extractive and exploitative forms of inclusion. Building trust takes time and researchers need to guard against potential for exploiting knowledge-rich communities. Despite the advancements in PPI frameworks, there remain structural and procedural barriers, as well as areas for improvement especially for populations who remain excluded from formalised approaches. PPI efforts can become professionalised and bureaucratised. For example, many PPI panels consist of members with similar health conditions and from similar social contexts without much consideration of intersecting vulnerabilities (e.g., race/ethnicity, sex, gender, neurodivergence, sexual orientation, socioeconomic status, disability) that shape health outcomes.37–40 PPI needs to be further adapted to facilitate inclusion of those located at the intersections of multiple disadvantages related to identities, health challenges, and socio-economic position. This is where RI approaches are complementary, and distinct from PPI as a form of representation based on health condition or care experiences. Indeed, RI seeks to identify those who are likely to not be recruited to existing PPI procedures or into research, or who will fall out of research. RI remains open to discovery of more complex identities and situations which practically affect participation in PPI activities and research. Yet intensive PPI and RI processes that takes account of people who are overlooked usually end up being undertaken with insufficient resources. Furthermore, funder agencies may resist paying the additional expenses, even if the makes the proposed research fairer and more ethical, and even if it appropriately challenges historically ineffective or exclusionary processes. We propose that RI is a specific extension of PPI to address the needs of ultra marginalised groups that may not even be known, and therefore not involved, at the start of research. RI promotes ongoing reflexivity and curiosity to improve procedures, so it strengthens PPI which may rely on and promote inclusion only through fixed mandated procedures. We found that researchers should avoid inflexible ways of working in PPI. Well-intentioned institutional plans seeking efficiency can so easily become inflexible and bureaucratised.41 The research team should build in additional thinking time and opportunities to consider modifications adjusted for the most marginalised from specific localities. This includes self-awareness and agility in grasping and overcoming barriers and knowledge gaps as a core task. Sometimes the pressure of preparing and launching a new research project against a strict timeline and working through all the contractual, ethical, workforce, and administrative stages can generate strain in the research team even if they have good intentions to make an impact. This needs care of the research team, especially if lived experience is prominent as planning, setting up and delivering research can be emotionally and cognitively demanding. This placed additional stress on teams; consequently, the PPI and RI elements can be compromised and neglected. Members of the research team often carry many, potentially undisclosed, experiences of poor mental and physical health, and so the content of the research may be distressing and emotionally challenging for them too. Building in reflective debriefs, and careful use of holidays and health days to overcome fatigue at different phases of the research, alongside flexible working and tailored support can be helpful. A good research culture should be able to accommodate discussion, to guide relationships within and between participants and researchers. Each research programme, we argue, should have an explicit values framework guiding expected behaviours to respectfully resolve disagreements and demonstrate accountability when resolving dilemmas. External facilitation can help team dynamics also. We recommend all members of the research team, irrespective of discipline or experience, undertake research inclusion training relevant to the specific project on which they are embarking, using and testing the participatory methods; for example, we have made good use of the approach recommended in living and learning labs (practice-based workshops where people learn by doing). These ensure embodied and experiential learning rather than intellectual knowledge. To improve RI elements in PPI, we drew on our collective experience of lessons learnt over several projects, and what we found helpful. From these we compiled a checklist as a set of standards derived from our work on various research projects. Our desire is for these standards to be adopted, but different types of research and specific tasks may require tailored refinement (e.g. cultural adaptation of psychological interventions or developing randomised controlled trials in low resource settings). The strategies we developed evolved in partnership with project specific PPI panels, peer researchers, and community partners. As part of testing the value of our learning, we shared a summary of this paper and checklist with five young people through a survey. We did this in this manner to reduce burden to them in terms of soliciting their views, recognising the paper is written for researchers rather than lived experience experts.42 We asked this group to rank our recommendations. We only present percentage endorsement for 1st and 2nd ranked statements; see Checklist). While this paper draws on our experiences and perspectives delivering a range of UK-based research studies, we acknowledge that our co-authorship team may not fully reflect the diversity of research teams working in this space, nor the breadth of intersectional identities that are marginalised or seldom heard in inclusion research. Our collective standpoint inevitably shapes what we have noticed, prioritised, and articulated as best practice, and there will be experiences, tensions, and insights that may not be fully reflected. The findings might be considered relevant to UK research studies, although our populations varied by age, sex, gender, ethnicity, sexuality, neurodivergence, and by place (urban, rural, coastal). Each study sought out a specific population with commensurate inclusion criteria. Hence, our findings will need testing against study designs and governance and research infrastructures in different countries. Feedback from five young participants helped identify the top checklist items, yet similar processes will be needed for different research populations. We hope readers will test and iterate the checklist, whilst we do the same, in order to produce a standardised reporting framework. We offer this work not as a definitive account but as a contribution to an ongoing conversation, and we actively encourage dialogue, challenge, and extension from researchers, communities, and participants whose voices and lived experiences are not adequately represented here.43 This paper draws together our learnings from multiple research projects funded by a range of commissioners, with recommendations built from studies involving people with mental illness and other health conditions. Taken together, meaningful research inclusion is not a procedural add-on but a sustained, relational practice requiring intentionality, humility, and adequate resourcing across the research cycle. We offer several recommendations for reflection, adaptation, and dialogue. We hope this paper supports research teams in advancing inclusive practice. This article did not require data assembly and formal analysis, rather a summary of our learning. No data are associated with this article. • Fear of research as a potential source of harm or as an extension of state authority into the everyday lives of people. • Over researched communities can feel exhausted, exploited, and not see the benefit of their participation personally or for the public. • A lack of trust given the historical record and legacy of systemic and scientific racism. Trust was developed through community connectors and intermediary organisations who were a source of much support. However, this requires more relationship and partnership work and the necessary time and appropriate pace to negotiate options. • Not understanding what research is. It’s not always about experimentation or medication trials nor of interventions. Such portrayal may attract some people with altruistic intentions but may also deter some who are aware of the historical harms inflicted upon marginalised groups over the years. • Wanting to retain control and not enter a series of processes and procedures which may or may not be perceived as beneficial. • Wanting to protect oneself from additional demands when living within limited resources (emotional, cognitive, and financial). The reality for many is that they make ends meet on a day-to-day basis; they are already under immense strain and face daily fatigue. The cognitive and emotional demands of research may be one step too far. • For people living in precarity, facing multiple disadvantages; or experiencing poverty, violence, trauma, and discrimination, being asked to give time and energy to research when they are not receiving adequate health or social care need can feel unjust. Furthermore, securing social or therapeutic support may be more urgent than the research task. What are the ethical parameters in which researchers operate when they see these common dilemmas? • For some at the intersections of multiple sources of disadvantage, well-intended research processes can be felt as traumatic and compound fears and worries about participation. For example, autistic people who may also be gender diverse, and/or from a racial minority, might need more thoughtful and compassionate approaches. Researchers will need to learn about identity-sensitive and trauma informed approaches.44 For example, information must be delivered at the right pace, in the right form, and from a trusted source, clarifying vocabularies and listening to preferences during the process. • Cultural and spiritual beliefs, illness perceptions, literacy levels, and linguistic isolation might become barriers if researchers do not anticipate and address these issues in good time and optimise, adapt and test proposed measures and procedures. • Resources should be included to address translation and interpretation, especially in mental health care where complex experiences and their meanings are not easily translated. Even validated measures have differing screening and performance properties. In our experience, consistency of interpreters, and translations reflecting common parlance rather than refined highly sophisticated translations are important. This means translators need to be versed in the conceptual and philosophical dilemmas of conveying meanings. • Protocol driven research to be completed against a schedule to a defined structure does not work in favour of research inclusion; such structured or standardised approaches make sense for efficiency, but if they are too inflexible they will perpetuate exclusion from research. While protocols are important, they should allow flexibility so that later changes are not perceived negatively as a protocol violations. • Ethics applications: Researchers and ethics committees will need to carefully consider modifications to standard operating procedures, and to manage quality improvement processes to address structural limitations over time more generally and for specific projects. They will need to ensure reflexivity and flexibility. • Miscommunications or failed expectations may be invalidating and compound preconceived fears and worries and undermine trust in a study. Careful design and preparation and involving a community panel can help prepare the tone of communications and vocabulary through which people can be sensitively approached and involved and supported in and out of research. • Operate a relational approach and build trust through partners and key lived experience experts and peer researchers with appropriate skills and experiences; these skills are valued and exceptional and should be recognised and rewarded as such (80%). • Ensure enough time and flexibility to accommodate unexpected needs and co-design of solutions (60%). • Ensure adequate resources and challenge extractive or exploitative processes, ensuring remuneration but also support into and before, during and after the research (20%). • Preliminary ethnography, for example, and meetings including all groups to learn about each other, and the diverse perspectives (without assumptions) can be invaluable (20%). • Ask for help: talk to communities of reference, to those groups you seek to work with, and take the time to respectfully engage and interact in a thoughtful and considerate manner (20%). • Incorporate reflexivity amongst researchers and lived-experience members to critically evaluate biases, assumptions and potential impact on the research programme as whole. Self-awareness and building trust to receive and act on participant feedback (e.g., critical friends) should be prioritised. • RI means being open to discovery during the research process, determining the right venues and ways to recruit, and sensitively clarify the expectations, identities and beliefs of potential participants. • Adopt a trauma-informed research approach that recognises the prevalence and impact of discrimination and trauma when working with underrepresented groups; prioritise emotional and physical safety, trust, transparency, cultural humility and cultural safety. • Research teams must ensure they are adequately prepared, aware, willing to learn, and can adapt their processes and procedures where required; ethical committees and sponsors and commissioners of research must also recognise this additional demand and cost. Indeed, we need more research on these issues and what additional resources and skills are required. • Interdisciplinarity is invaluable as a form of challenge to silos of disciplinary paradigms. However, this required additional time for people to develop interdisciplinary competencies and avoid unhelpful group dynamics. • As you do the work, evolve better methods, practices, design, and see challenges as sources of interest and refinement rather than a frustration. • Agree procedures for resolving disputes, conflict, disagreements, and align this with project values and policies (e.g. for remuneration, authorship, etc). • Return to lived experience experts to identify what matters, and how to resolve disagreements. We also found the quality of the conversations and scholarship was enhanced by involving people with complex intersectional locations and identities; such an approach requires a flatter power structure and agreed processes and vocabularies. EDI toolkit: https://arc-nenc.nihr.ac.uk/virtual-college/equality-diversity-and-inclusion-edi-toolkit/ Centre for Ethnic Health Research Toolkit for Increasing the Participation of Black, Asian and Minority Ethnic Communities: https://arc-em.nihr.ac.uk/arc-store-resources/increasing-participation-black-asian-and-minority-ethnic-groups-health-and Heath inequalities impact assessment toolkit: https://forequity.uk/hiat/ How to incorporate Equality, Diversity and Inclusion (EDI) in Patient and Public Involvement (PPI) NIHRTV https://www.youtube.com/watch?v=j0cmoPLYW5c Bristol, North Somerset, and South Gloucestershire Trauma-Informed Practice Framework: https://bristolsafeguarding.org/media/dlhebkrr/bnssg-trauma-informed-practice-framework-2024.pdf Trauma-Informed Social Research: A Practical Guide: https://www.tnlcommunityfund.org.uk/media/insights/documents/Trauma-informed-social-research-A-practical-guide-2021.pdf?mtime=20220711144114&focal=none#:~:text=At%20the%20centre%20of%20trauma,%2C%20collaboration%2C%20choice%20and%20voice. 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Publisher Full Text Author details Author details 1 Department of Psychiatry, University of Oxford, Oxford, England, UK 2 NIHR Oxford Health Biomedical Research Centre, Oxford, England, UK 3 Wadham College, University of Oxford, Oxford, England, UK 4 World Psychiatric Association Collaborating Centre, Oxford, England, UK 5 Centre for Psychiatry and Mental Health, Wolfson Institute of Population Health, Queen Mary University of London, London, England, UK 6 Dept of Applied Health Sciences, University of Birmingham, Birmingham, England, UK 7 Institute for Mental Health, University of Birmingham, Birmingham, England, UK 2 NIHR Oxford Health Biomedical Research Centre, Oxford, England, UK 3 Wadham College, University of Oxford, Oxford, England, UK 4 World Psychiatric Association Collaborating Centre, Oxford, England, UK 5 Centre for Psychiatry and Mental Health, Wolfson Institute of Population Health, Queen Mary University of London, London, England, UK 6 Dept of Applied Health Sciences, University of Birmingham, Birmingham, England, UK 7 Institute for Mental Health, University of Birmingham, Birmingham, England, UK Kamaldeep Bhui Roles: Conceptualization, Data Curation, Funding Acquisition, Investigation, Methodology, Project Administration, Resources, Supervision, Writing – Original Draft Preparation, Writing – Review & Editing Roles: Conceptualization, Data Curation, Funding Acquisition, Investigation, Methodology, Project Administration, Resources, Supervision, Writing – Original Draft Preparation, Writing – Review & Editing Roisin Mooney Roles: Funding Acquisition, Investigation, Project Administration, Resources, Supervision, Writing – Review & Editing Roles: Funding Acquisition, Investigation, Project Administration, Resources, Supervision, Writing – Review & Editing Melissa Stepney Roles: Conceptualization, Investigation, Methodology, Project Administration, Writing – Review & Editing Roles: Conceptualization, Investigation, Methodology, Project Administration, Writing – Review & Editing Kanwal Mand Roles: Conceptualization, Data Curation, Investigation, Methodology, Project Administration, Writing – Review & Editing Roles: Conceptualization, Data Curation, Investigation, Methodology, Project Administration, Writing – Review & Editing Megan Kirk Roles: Conceptualization, Data Curation, Investigation, Methodology, Supervision, Writing – Review & Editing Roles: Conceptualization, Data Curation, Investigation, Methodology, Supervision, Writing – Review & Editing Erin Lawrence Roles: Data Curation, Formal Analysis, Methodology, Project Administration, Writing – Review & Editing Roles: Data Curation, Formal Analysis, Methodology, Project Administration, Writing – Review & Editing Anna Lavis Roles: Conceptualization, Funding Acquisition, Methodology, Project Administration, Supervision, Writing – Review & Editing Roles: Conceptualization, Funding Acquisition, Methodology, Project Administration, Supervision, Writing – Review & Editing Competing interests No competing interests were disclosed. Grant information This paper was inspired by research inclusion strategies developed in the design and delivery of the following research projects: ATTUNE funded by UKRI programme on Adolescent Mental Health and the Developing Mind (MR/W002183/1), Co-Pics NIHR Health and Social Care Delivery and Research Panel (NIHR151887), London Interdisciplinary Social Science Doctoral Training Partnership (LISS-DTP) PhD Studentship (grant number ES/P000703/1) ; Oxford Health NIHR BRC’s Developmental and Preventing multimorbidity themes. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Article Versions (2) Copyright © 2026 Bhui K et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. metrics VIEWS $counts.viewCount downloads Citations CITE how to cite this article Bhui K, Mooney R, Stepney M et al. Improving Research Inclusion: learning from NIHR and Research Council funded studies in England [version 2; peer review: 2 approved with reservations, 1 not approved]. NIHR Open Res 2026, 5:102 (https://doi.org/10.3310/nihropenres.14116.2) NOTE: If applicable, it is important to ensure the information in square brackets after the title is included in all citations of this article. track receive updates on this article Track an article to receive email alerts on any updates to this article. Current Reviewer Status: ? Key to Reviewer Statuses VIEW HIDE ApprovedThe paper is scientifically sound in its current form and only minor, if any, improvements are suggested Approved with reservations A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit. Not approvedFundamental flaws in the paper seriously undermine the findings and conclusions Version 1 VERSION 1 PUBLISHED 16 Oct 2025 Views 0 How to cite this report: Mukwezwa-Tapera R. Reviewer Report For: Improving Research Inclusion: learning from NIHR and Research Council funded studies in England [version 2; peer review: 2 approved with reservations, 1 not approved]. NIHR Open Res 2026, 5:102 (https://doi.org/10.3310/nihropenres.15352.r38841) The direct URL for this report is: https://openresearch.nihr.ac.uk/articles/5-102/v1#referee-response-38841 https://openresearch.nihr.ac.uk/articles/5-102/v1#referee-response-38841 NOTE: it is important to ensure the information in square brackets after the title is included in this citation. Reviewer Report 28 Jan 2026 Rachel Mukwezwa-Tapera, The University of Auckland, Auckland, Auckland, New Zealand Approved with Reservations VIEWS 0 Thank you for the opportunity to review this very important and timely piece of work that fills a real practice gap in research inclusion, particularly with disadvantaged and ultra-marginalised communities. This paper focuses on what is actually taking place on ... Continue reading I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above. Close Thank you for the opportunity to review this very important and timely piece of work that fills a real practice gap in research inclusion, particularly with disadvantaged and ultra-marginalised communities. This paper focuses on what is actually taking place on the ground, taking into consideration time, trust-building, flexibility, text negotiations, infrastructure barriers, and relational work. This practical systems-level view of inclusion is a major strength that is rarely articulated. The framing of inclusion as a power-and-trust issue is another important aspect highlighted. The checklist provided turns abstract inclusion principles into operational guidance. Even though it's still evolving, it gives research teams something concrete to work with. The insights are valuable, ethically grounded and highly relevant for researchers and funders as well. However, the paper currently reads more like an insightful reflection than a clearly defined synthesis or analytical piece. Strengthening methodological transparency, conceptual clarity, and structure would significantly enhance its contribution and credibility. Definition of RI - An in-depth definition of Research Inclusion (RI), and what it specifically means to the authors in the context of this paper, is not fully clear. Inclusion appears to refer not only to who participates in research but also to who shapes research, whose knowledge counts, and how research processes are adapted to reduce structural and relational barriers. A clearer definition of inclusion would help distinguish between representation, participation, co-design, and institutional change. The authors state that there is little ‘practical information’ on RI, while this is true, perhaps positioning RI in relation to other literature (e.g. participatory/community-based research, co-production/co-creation, trauma-informed research, critical/decolonial/Indigenous methodologies, etc.) would clarify what is distinctive here, avoid the impression of conceptual isolation and strengthen theoretical grounding. Inclusion and equity - Inclusion is closely tied to equity, but the mechanism is not explicitly unpacked. Equity requires adapting research design, resources, and procedures so that those with greater barriers can participate meaningfully. Highlighting how RI contributes to equity by adapting research design, resources and other aspects could be an essential addition. The dimensions of genuine inclusion are implied but not clearly articulated. How do we ensure RI is not consultative or tokenistic? How do we ensure RI addresses epistemic injustice, rebalances power in decision making, improves trust and relevance, and shapes ethical and practical adaptations? It might be helpful to present the core domains thematically and use examples from the studies where possible. (e.g. research team culture, working with lived experience, resources, ethics, trust/power, language and knowledge). Inclusion in research dissemination is not fully explored. If RI is about whose knowledge is valued and who benefits from research, then inclusion should also extend to accessible formats for information sharing, community-based dissemination, and other channels other than academic publication. RI and PPI – there appears to be an overlap between these two; however, there is little conceptual clarification. Is RI about who participates in research? Is PPI about involvement in research design and governance? Is RI and extension or reframing of inclusive PPI? Ethics – The ethics section is excellent and an enjoyable read that raises unresolved governance questions. Where are the boundaries of acceptable flexibility, and who sets them? Who assumes responsibility when deviating from standard protocol? Were any proposed adaptations rejected by ethics bodies (if yes, why?). Including reflections on governance realities would further strengthen this section. Synthesis of the lessons learnt – The process by which this process was done was not sufficiently explained. How were insights gathered from the different studies? Was there any structured reflection, documentation, or analytic process? How were the differing views/perspectives of researchers or partners handled? A brief description of the process undertaken to generate and synthesise learning would strengthen trust in the conclusions. The studies that this paper is based on are quite different; however, the learning is presented as largely universal. Did inclusion challenges/opportunities differ by context/study? Were some recommendations specific to certain designs? Acknowledging both differences and similarities across the studies would make the guidance in this paper more credible and nuanced. What did not work? – Including examples of failed approaches, tensions within teams, missteps with communities, unresolved dilemmas, trade-offs and other messy realities would strongly align with the paper’s reflective aim. Language accessibility – the authors note that language can be exclusionary, and if the article is to have broader accessibility (beyond academic circles) and RI alignment, some of the academic phrasing used requires detailed explanation (e.g., terms such as epistemic injustice, procedural justice, intersectional vulnerabilities, helicopter research, reflexivity). This creates a tension between argument and form. Limits of generalisation – Are the lessons primarily relevant to UK NIHR contexts? How applicable are they to tightly regulated trials? What resource assumptions underlie the recommendations provided? If working with communities with different cultures, languages, and religions, how do you ensure RI and manage conflicts? Implications – what are the implications of RI for researchers, funders, ethics committees, and institutions? The checklist is an amazing tool; however, it is not clear how the items were generated. Were these the only items generated, or were there others? If there were others, detail how and why they didn’t make it to the final checklist. Why were only 5 young people consulted for the ranking? Was that the response you were looking for, or was it lower than expected? Would the intersecting attributes of the people involved in the research affect how the ranking is done? What does the ranking represent (priority, feasibility, importance, etc)? Do teams get to rank as they see fit for their situations? If not, the ranking on the checklist might be misleading in my view, as different teams and contexts are likely to have very different requirements; e.g., ensuring adequate resources might be a higher priority for some research teams with an ongoing/strong relationship with their communities. Providing clarity on the checklist's development process and the intended future testing could be helpful to readers. Thanks again for the opportunity to read your work. I hope you will find my input useful. All the best. Definition of RI - An in-depth definition of Research Inclusion (RI), and what it specifically means to the authors in the context of this paper, is not fully clear. Inclusion appears to refer not only to who participates in research but also to who shapes research, whose knowledge counts, and how research processes are adapted to reduce structural and relational barriers. A clearer definition of inclusion would help distinguish between representation, participation, co-design, and institutional change. The authors state that there is little ‘practical information’ on RI, while this is true, perhaps positioning RI in relation to other literature (e.g. participatory/community-based research, co-production/co-creation, trauma-informed research, critical/decolonial/Indigenous methodologies, etc.) would clarify what is distinctive here, avoid the impression of conceptual isolation and strengthen theoretical grounding. Inclusion and equity - Inclusion is closely tied to equity, but the mechanism is not explicitly unpacked. Equity requires adapting research design, resources, and procedures so that those with greater barriers can participate meaningfully. Highlighting how RI contributes to equity by adapting research design, resources and other aspects could be an essential addition. The dimensions of genuine inclusion are implied but not clearly articulated. How do we ensure RI is not consultative or tokenistic? How do we ensure RI addresses epistemic injustice, rebalances power in decision making, improves trust and relevance, and shapes ethical and practical adaptations? It might be helpful to present the core domains thematically and use examples from the studies where possible. (e.g. research team culture, working with lived experience, resources, ethics, trust/power, language and knowledge). Inclusion in research dissemination is not fully explored. If RI is about whose knowledge is valued and who benefits from research, then inclusion should also extend to accessible formats for information sharing, community-based dissemination, and other channels other than academic publication. RI and PPI – there appears to be an overlap between these two; however, there is little conceptual clarification. Is RI about who participates in research? Is PPI about involvement in research design and governance? Is RI and extension or reframing of inclusive PPI? Ethics – The ethics section is excellent and an enjoyable read that raises unresolved governance questions. Where are the boundaries of acceptable flexibility, and who sets them? Who assumes responsibility when deviating from standard protocol? Were any proposed adaptations rejected by ethics bodies (if yes, why?). Including reflections on governance realities would further strengthen this section. Synthesis of the lessons learnt – The process by which this process was done was not sufficiently explained. How were insights gathered from the different studies? Was there any structured reflection, documentation, or analytic process? How were the differing views/perspectives of researchers or partners handled? A brief description of the process undertaken to generate and synthesise learning would strengthen trust in the conclusions. The studies that this paper is based on are quite different; however, the learning is presented as largely universal. Did inclusion challenges/opportunities differ by context/study? Were some recommendations specific to certain designs? Acknowledging both differences and similarities across the studies would make the guidance in this paper more credible and nuanced. What did not work? – Including examples of failed approaches, tensions within teams, missteps with communities, unresolved dilemmas, trade-offs and other messy realities would strongly align with the paper’s reflective aim. Language accessibility – the authors note that language can be exclusionary, and if the article is to have broader accessibility (beyond academic circles) and RI alignment, some of the academic phrasing used requires detailed explanation (e.g., terms such as epistemic injustice, procedural justice, intersectional vulnerabilities, helicopter research, reflexivity). This creates a tension between argument and form. Limits of generalisation – Are the lessons primarily relevant to UK NIHR contexts? How applicable are they to tightly regulated trials? What resource assumptions underlie the recommendations provided? If working with communities with different cultures, languages, and religions, how do you ensure RI and manage conflicts? Implications – what are the implications of RI for researchers, funders, ethics committees, and institutions? The checklist is an amazing tool; however, it is not clear how the items were generated. Were these the only items generated, or were there others? If there were others, detail how and why they didn’t make it to the final checklist. Why were only 5 young people consulted for the ranking? Was that the response you were looking for, or was it lower than expected? Would the intersecting attributes of the people involved in the research affect how the ranking is done? What does the ranking represent (priority, feasibility, importance, etc)? Do teams get to rank as they see fit for their situations? If not, the ranking on the checklist might be misleading in my view, as different teams and contexts are likely to have very different requirements; e.g., ensuring adequate resources might be a higher priority for some research teams with an ongoing/strong relationship with their communities. Providing clarity on the checklist's development process and the intended future testing could be helpful to readers. Thanks again for the opportunity to read your work. I hope you will find my input useful. All the best. - Is the topic of the review discussed comprehensively in the context of the current literature? Partly - Are all factual statements correct and adequately supported by citations? Partly - Is the review written in accessible language? Partly - Are the conclusions drawn appropriate in the context of the current research literature? Partly Competing Interests: No competing interests were disclosed. Reviewer Expertise: Inclusive Research. Indigenous Theories and Methodologies. Decolonial Approaches. Research Approaches with diverse communities. CITE HOW TO CITE THIS REPORT Mukwezwa-Tapera R. Reviewer Report For: Improving Research Inclusion: learning from NIHR and Research Council funded studies in England [version 2; peer review: 2 approved with reservations, 1 not approved]. NIHR Open Res 2026, 5:102 (https://doi.org/10.3310/nihropenres.15352.r38841) The direct URL for this report is: https://openresearch.nihr.ac.uk/articles/5-102/v1#referee-response-38841 https://openresearch.nihr.ac.uk/articles/5-102/v1#referee-response-38841 NOTE: it is important to ensure the information in square brackets after the title is included in all citations of this article. Views 0 How to cite this report: Gidlow C. Reviewer Report For: Improving Research Inclusion: learning from NIHR and Research Council funded studies in England [version 2; peer review: 2 approved with reservations, 1 not approved]. NIHR Open Res 2026, 5:102 (https://doi.org/10.3310/nihropenres.15352.r38341) The direct URL for this report is: https://openresearch.nihr.ac.uk/articles/5-102/v1#referee-response-38341 https://openresearch.nihr.ac.uk/articles/5-102/v1#referee-response-38341 NOTE: it is important to ensure the information in square brackets after the title is included in this citation. Reviewer Report 10 Jan 2026 Approved with Reservations VIEWS 0 The authors present an insightful and helpful reflection on research inclusion (RI) by drawing on experiences from four funded studies that worked with often marginalised groups. It is a very accessible article and identifies some important messages for researchers, ethics ... Continue reading 2. Karran E, Cashin A, Barker T, Boyd M, et al.: Using PROGRESS-plus to identify current approaches to the collection and reporting of equity-relevant data: a scoping review. Journal of Clinical Epidemiology. 2023; 163: 70-78 Publisher Full Text 3. J, Kavanagh S, Oliver: Reflections on developing and using PROGRESS-Plus. https://www.researchgate.net/publication/285979865_Reflections_on_developing_and_using_PROGRESS-Plus. 2008. I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above. Close The authors present an insightful and helpful reflection on research inclusion (RI) by drawing on experiences from four funded studies that worked with often marginalised groups. It is a very accessible article and identifies some important messages for researchers, ethics committees, funders, and commissioners. I very much like the recommendations and checklist. 1. Type of article. It would be helpful to be explicit about what type of article this is. In the Abstract it is described as a ‘synthesis of lessons learned’ and in the Background, as ‘an overview of RI approaches and considerations that we discovered and iteratively addressed before and during the studies… observations were derived through deliberations within our research teams, our advisory boards, our PPI groups, and in the research design.’ It has the feel of a commentary based on the collective experiences, rather than a synthesis, as there is no information about the methods through which the experiences were brought together/synthesised to generate the key learning points (aside from the panel of 5 young people to rank the checklist items). My suggestion would be to increase the clarity on what sort of article this is and if possible, add more detail on how these experiences were collated. 2. Plain English summary. Ironically, given the topic of the paper, this is the weakest part. There is some content that is too academic in tone/language, some sentences that are poorly written, and there are some errors. A thorough proofread and input from a public member are recommended. 3. More detail on PPIE in four studies (p4). I understand that the purpose is not to present the approaches used in the four underpinning studies, but a table or similar that summarised the PPIE methods used in each would be helpful to show some specific examples and demonstrate the range. 4. In the background, it might be helpful to also point readers towards the extensive literature and guidance around reporting of subgroups for equity. E.g., Hollands, G. J.; South, E.; Shemilt, I.; Oliver, S.; Thomas, J.; Sowden, A. J., Methods used to conceptualize dimensions of health equity impacts of public health interventions in systematic reviews. Journal of Clinical Epidemiology 2024, 169, 111312. (Ref 1) Karran, E. L.; Cashin, A. G.; Barker, T.; Boyd, M. A.; Chiarotto, A.; Dewidar, O.; Mohabir, V.; Petkovic, J.; Sharma, S.; Tejani, S.; Tugwell, P.; Moseley, G. L., Using PROGRESS-plus to identify current approaches to the collection and reporting of equity-relevant data: a scoping review. Journal of Clinical Epidemiology 2023, 163, 70-78. (Ref 2) Kavanaugh, J.; Oliver, S.; Lorenc, T., Reflections on developing and using PROGRESS-Plus Equity Update. Equity Update: Cochrane Health Equity Methods Group 2008, 2, (2), 1-3. (Ref 3) Discussion/analysis. Page 8 – one potential recommendation, which I do not think I saw explicitly (apologies if I missed it), is to work with intermediary organisations that specialise in working with the target group. Researchers are often not well placed or equipped to identify, approach, recruit or perhaps speak with some individuals. Building in time and resource to partner with those organisations, perhaps paying for their staff time to recruit, facilitate data collection, etc. can be critical to reach groups and ensure that their voices are heard. 1. Type of article. It would be helpful to be explicit about what type of article this is. In the Abstract it is described as a ‘synthesis of lessons learned’ and in the Background, as ‘an overview of RI approaches and considerations that we discovered and iteratively addressed before and during the studies… observations were derived through deliberations within our research teams, our advisory boards, our PPI groups, and in the research design.’ It has the feel of a commentary based on the collective experiences, rather than a synthesis, as there is no information about the methods through which the experiences were brought together/synthesised to generate the key learning points (aside from the panel of 5 young people to rank the checklist items). My suggestion would be to increase the clarity on what sort of article this is and if possible, add more detail on how these experiences were collated. 2. Plain English summary. Ironically, given the topic of the paper, this is the weakest part. There is some content that is too academic in tone/language, some sentences that are poorly written, and there are some errors. A thorough proofread and input from a public member are recommended. 3. More detail on PPIE in four studies (p4). I understand that the purpose is not to present the approaches used in the four underpinning studies, but a table or similar that summarised the PPIE methods used in each would be helpful to show some specific examples and demonstrate the range. 4. In the background, it might be helpful to also point readers towards the extensive literature and guidance around reporting of subgroups for equity. E.g., Hollands, G. J.; South, E.; Shemilt, I.; Oliver, S.; Thomas, J.; Sowden, A. J., Methods used to conceptualize dimensions of health equity impacts of public health interventions in systematic reviews. Journal of Clinical Epidemiology 2024, 169, 111312. (Ref 1) Karran, E. L.; Cashin, A. G.; Barker, T.; Boyd, M. A.; Chiarotto, A.; Dewidar, O.; Mohabir, V.; Petkovic, J.; Sharma, S.; Tejani, S.; Tugwell, P.; Moseley, G. L., Using PROGRESS-plus to identify current approaches to the collection and reporting of equity-relevant data: a scoping review. Journal of Clinical Epidemiology 2023, 163, 70-78. (Ref 2) Kavanaugh, J.; Oliver, S.; Lorenc, T., Reflections on developing and using PROGRESS-Plus Equity Update. Equity Update: Cochrane Health Equity Methods Group 2008, 2, (2), 1-3. (Ref 3) Discussion/analysis. - Under the first two subheadings, an example or two from the underpinning studies would help to illustrate the suggestions; i.e., how you achieved these in a specific context. - Page 5 – when discussing the benefits of co-design that brings together the designers/deliverers and intended recipients of an intervention/public. Would another potential benefit be breaking down barriers and potentially unhelpful perceptions, and allowing stakeholders to become used to working with and hearing from the target group, which all serves to address the power imbalance? - Page 6 – ethical issues. I agree with everything written here. Current traditional processes are well-intentioned but often inappropriate in the types of settings you are working in. The recommendations do refer to ethics (under ‘Protocol drive research…’) but I wonder if this warrants its own bullet point to make a very specific and targeted point that researchers can use when making the case to ethics committees for flexible and proportionate approaches to working with some groups. Page 8 – one potential recommendation, which I do not think I saw explicitly (apologies if I missed it), is to work with intermediary organisations that specialise in working with the target group. Researchers are often not well placed or equipped to identify, approach, recruit or perhaps speak with some individuals. Building in time and resource to partner with those organisations, perhaps paying for their staff time to recruit, facilitate data collection, etc. can be critical to reach groups and ensure that their voices are heard. - Is the topic of the review discussed comprehensively in the context of the current literature? Yes - Are all factual statements correct and adequately supported by citations? Yes - Is the review written in accessible language? Yes - Are the conclusions drawn appropriate in the context of the current research literature? Yes

1. Hollands G, South E, Shemilt I, Oliver S, et al.: Methods used to conceptualize dimensions of health equity impacts of public health interventions in systematic reviews. Journal of Clinical Epidemiology. 2024; 169. Publisher Full Text2. Karran E, Cashin A, Barker T, Boyd M, et al.: Using PROGRESS-plus to identify current approaches to the collection and reporting of equity-relevant data: a scoping review. Journal of Clinical Epidemiology. 2023; 163: 70-78 Publisher Full Text 3. J, Kavanagh S, Oliver: Reflections on developing and using PROGRESS-Plus. https://www.researchgate.net/publication/285979865_Reflections_on_developing_and_using_PROGRESS-Plus. 2008. Competing Interests: No competing interests were disclosed. Reviewer Expertise: Health inequalities, multiple disadvantage CITE HOW TO CITE THIS REPORT Gidlow C. Reviewer Report For: Improving Research Inclusion: learning from NIHR and Research Council funded studies in England [version 2; peer review: 2 approved with reservations, 1 not approved]. NIHR Open Res 2026, 5:102 (https://doi.org/10.3310/nihropenres.15352.r38341) The direct URL for this report is: https://openresearch.nihr.ac.uk/articles/5-102/v1#referee-response-38341 https://openresearch.nihr.ac.uk/articles/5-102/v1#referee-response-38341 NOTE: it is important to ensure the information in square brackets after the title is included in all citations of this article. Views 0 How to cite this report: Kara H. Reviewer Report For: Improving Research Inclusion: learning from NIHR and Research Council funded studies in England [version 2; peer review: 2 approved with reservations, 1 not approved]. NIHR Open Res 2026, 5:102 (https://doi.org/10.3310/nihropenres.15352.r37861) The direct URL for this report is: https://openresearch.nihr.ac.uk/articles/5-102/v1#referee-response-37861 https://openresearch.nihr.ac.uk/articles/5-102/v1#referee-response-37861 NOTE: it is important to ensure the information in square brackets after the title is included in this citation. Reviewer Report 23 Dec 2025 Helen Kara, We Research It Ltd, Uttoxeter, UK Not Approved VIEWS 0 The article sets out to make recommendations for research inclusion based on learning from the recruitment phases of four PPI projects. Research inclusion itself is laudable, as is sharing learning at the earliest possible stage. However, I think there is ... Continue reading I confirm that I have read this submission and believe that I have an appropriate level of expertise to state that I do not consider it to be of an acceptable scientific standard, for reasons outlined above. Close The article sets out to make recommendations for research inclusion based on learning from the recruitment phases of four PPI projects. Research inclusion itself is laudable, as is sharing learning at the earliest possible stage. However, I think there is more to be done to make this article truly beneficial. The authors assert that there is little practical information for researchers on how to do research inclusion. Under this specific term, they are correct. However, there are sizeable bodies of literature on approaches that are very closely related: participatory methods of various kinds, community-based research, co-production, co-creation, trauma-informed research, and so on – including their use in health settings and/or to investigate health-related topics. Many of these sources include practical information on how to implement the approaches they describe. These may well chime with the suggestions made in the article. I recommend that the authors familiarize themselves with these literatures and situate their work accordingly. What does research inclusion in health settings have in common with these other approaches? Are there specific features of research inclusion in health settings that make it different from related approaches? Here are some suggested starting points: https://www.annfammed.org/content/8/3/256.short https://journals.lww.com/EDHE/abstract/2001/14020/Community_based_Participatory_Research__Policy.6.aspx https://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.2001403 https://www.tandfonline.com/doi/abs/10.1080/14719037.2014.881539 https://www.tandfonline.com/doi/abs/10.1080/14780887.2022.2107967 As far as I can tell, all factual statements are correct; they certainly seem to be, but I have no way of checking because many are not supported by citations. The article is quite lightly referenced, which isn’t necessarily a problem, but if (as the peer review report form suggests) NIHR Open Research policy is for all factual statements to be adequately supported by citations, I do not think the authors have complied. That said, it is clear that some of the points they make are derived from the experiences of people involved in participant recruitment, so citations, as such, would not be appropriate for those points. However, the article jumps from ‘background’ to ‘discussion and analysis’ without any explanation of what happened in between. I take the point that the authors don’t want to give a full report of all the PPI arrangements, and I don’t think such a report is necessary. But they could report on how they gathered and analyzed data from people’s experiences, with some systematically selected illustrative quotes, which would help readers understand how the authors arrived at the conclusions they have drawn. Some of the language used is accessible. There is a plain language summary, which is helpful, though it is not very well written. There are several over-long sentences. The Plain English Campaign recommends 20 words as a general maximum sentence length and 25 words as an absolute maximum. This sentence is 50 words long: “This occurs if their complex health problems and social situations prevent them from following the procedures by which people are recruited into research; they may have more immediate social and health care needs, or their complex conditions may be the basis of exclusion if researchers are studying a single condition.” And it is not very clear what this sentence means. The summary could be a lot plainer and clearer without being dumbed down. Also, there are a number of grammatical errors and typos which need to be fixed, such as “…the Nation Institute of Health Research” (actually the National Institute for Health and Care Research, when written out in full). I would recommend consulting the Plain English Campaign’s website for guidance. I would also recommend reading a final draft of the summary aloud, to help identify any further changes that need to be made. In the body of the article, the authors acknowledge that “Esoteric or technical language… can act as a barrier to inclusion,” but they use such language regularly. Is it only researchers, or at least those who can follow technical research language, who get to find out how to improve research inclusion? Because that seems quite exclusive and therefore contradictory. Also, NIHR’s Open Research is intended to “enable others to build upon new ideas right away, wherever and whoever they are.” This suggests that materials on the platform need to be written in such a way that they could be used by research participants and the general public as well as academics and medical professionals. This article is not currently written in such a way, but it could be – and, in my view, it should be. In terms of the conclusions, I have chosen ‘partly’ as it’s difficult to tell whether the conclusions are appropriate in the context of the current research literature. This is because – as outlined above – so little of the relevant literature has been cited. I think the current version forms the basis of a useful article. I hope this review will help the authors. I am required to decide whether I think this article is scientifically valid. I don't think that is an appropriate criterion for this article. My actual view is that the article is good as far as it goes, but it doesn't go far enough, and it needs to be written better. This is a qualitative judgement not a scientific judgement. The authors assert that there is little practical information for researchers on how to do research inclusion. Under this specific term, they are correct. However, there are sizeable bodies of literature on approaches that are very closely related: participatory methods of various kinds, community-based research, co-production, co-creation, trauma-informed research, and so on – including their use in health settings and/or to investigate health-related topics. Many of these sources include practical information on how to implement the approaches they describe. These may well chime with the suggestions made in the article. I recommend that the authors familiarize themselves with these literatures and situate their work accordingly. What does research inclusion in health settings have in common with these other approaches? Are there specific features of research inclusion in health settings that make it different from related approaches? Here are some suggested starting points: https://www.annfammed.org/content/8/3/256.short https://journals.lww.com/EDHE/abstract/2001/14020/Community_based_Participatory_Research__Policy.6.aspx https://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.2001403 https://www.tandfonline.com/doi/abs/10.1080/14719037.2014.881539 https://www.tandfonline.com/doi/abs/10.1080/14780887.2022.2107967 As far as I can tell, all factual statements are correct; they certainly seem to be, but I have no way of checking because many are not supported by citations. The article is quite lightly referenced, which isn’t necessarily a problem, but if (as the peer review report form suggests) NIHR Open Research policy is for all factual statements to be adequately supported by citations, I do not think the authors have complied. That said, it is clear that some of the points they make are derived from the experiences of people involved in participant recruitment, so citations, as such, would not be appropriate for those points. However, the article jumps from ‘background’ to ‘discussion and analysis’ without any explanation of what happened in between. I take the point that the authors don’t want to give a full report of all the PPI arrangements, and I don’t think such a report is necessary. But they could report on how they gathered and analyzed data from people’s experiences, with some systematically selected illustrative quotes, which would help readers understand how the authors arrived at the conclusions they have drawn. Some of the language used is accessible. There is a plain language summary, which is helpful, though it is not very well written. There are several over-long sentences. The Plain English Campaign recommends 20 words as a general maximum sentence length and 25 words as an absolute maximum. This sentence is 50 words long: “This occurs if their complex health problems and social situations prevent them from following the procedures by which people are recruited into research; they may have more immediate social and health care needs, or their complex conditions may be the basis of exclusion if researchers are studying a single condition.” And it is not very clear what this sentence means. The summary could be a lot plainer and clearer without being dumbed down. Also, there are a number of grammatical errors and typos which need to be fixed, such as “…the Nation Institute of Health Research” (actually the National Institute for Health and Care Research, when written out in full). I would recommend consulting the Plain English Campaign’s website for guidance. I would also recommend reading a final draft of the summary aloud, to help identify any further changes that need to be made. In the body of the article, the authors acknowledge that “Esoteric or technical language… can act as a barrier to inclusion,” but they use such language regularly. Is it only researchers, or at least those who can follow technical research language, who get to find out how to improve research inclusion? Because that seems quite exclusive and therefore contradictory. Also, NIHR’s Open Research is intended to “enable others to build upon new ideas right away, wherever and whoever they are.” This suggests that materials on the platform need to be written in such a way that they could be used by research participants and the general public as well as academics and medical professionals. This article is not currently written in such a way, but it could be – and, in my view, it should be. In terms of the conclusions, I have chosen ‘partly’ as it’s difficult to tell whether the conclusions are appropriate in the context of the current research literature. This is because – as outlined above – so little of the relevant literature has been cited. I think the current version forms the basis of a useful article. I hope this review will help the authors. I am required to decide whether I think this article is scientifically valid. I don't think that is an appropriate criterion for this article. My actual view is that the article is good as far as it goes, but it doesn't go far enough, and it needs to be written better. This is a qualitative judgement not a scientific judgement. - Is the topic of the review discussed comprehensively in the context of the current literature? No - Are all factual statements correct and adequately supported by citations? Partly - Is the review written in accessible language? Partly - Are the conclusions drawn appropriate in the context of the current research literature? Partly Competing Interests: No competing interests were disclosed. Reviewer Expertise: Creative research methods including participatory/co-produced/co-created/trauma-informed etc. Research ethics. Health and social care. CITE HOW TO CITE THIS REPORT Kara H. Reviewer Report For: Improving Research Inclusion: learning from NIHR and Research Council funded studies in England [version 2; peer review: 2 approved with reservations, 1 not approved]. NIHR Open Res 2026, 5:102 (https://doi.org/10.3310/nihropenres.15352.r37861) The direct URL for this report is: https://openresearch.nihr.ac.uk/articles/5-102/v1#referee-response-37861 https://openresearch.nihr.ac.uk/articles/5-102/v1#referee-response-37861 NOTE: it is important to ensure the information in square brackets after the title is included in all citations of this article. 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