Barriers to Participation of Beneficiaries in Healthcare Research Projects: A Cross-Sectional Mixed-Methods Study

Geographical Barriers

The data presented by the literature reported that the participants, especially those from rural or remote areas and individuals with mobility issues, faced considerable logistical challenges in attending meetings or accessing research sites, with greater travel distances correlating to lower retention rates. Factors such as unemployment, housing insecurity, and transportation difficulties further hindered involvement, particularly among caregivers with substance use disorders (Anderst et al., 2020; Corr et al., 2024; Domecq et al., 2014; Gao et al., 2024; Werner et al., 2025; Zibrowski et al., 2021).

Time Constraints

The data presented by the literature revealed that both researchers and participants faced significant challenges that have limited meaningful engagement in healthcare research projects. Researchers frequently encountered competing demands, including heavy clinical workloads, teaching responsibilities, and institutional requirements such as ethics approvals, which often conflicted with the timelines necessary for participatory research. Similarly, participants were burdened by busy personal schedules, including parenting, work commitments, and diverse family obligations, which restricted their availability. The engagement process itself required additional time for activities such as training, meetings, and travel, further increasing the time burden on all parties involved. Limited protected time for research activities, coupled with organizational issues including funding shortages, logistical difficulties, and gatekeeping by institutional boards, compounded these constraints. Insufficient financial, staff, and training resources has also hindered the capacity of both researchers and public partners to participate fully. These time-related challenges led to perceptions of research projects as overly time-consuming and burdensome, contributing to higher withdrawal rates (Anderst et al., 2020; Bowness et al., 2024; Brodeur et al., 2025; Chen et al., 2025; Corr et al., 2024; Domecq et al., 2014; Flynn et al., 2019; Gao et al., 2024; Sahin et al., 2014; Warraitch et al., 2024; Wearn et al., 2025).

The interview data revealed that one of the primary barriers to healthcare researchers’ participation in research projects was the limitation imposed by short project timelines. Participants reported that the durations allocated for their research activities were insufficient, often resulting in barely enough time to complete data collection, with minimal or no opportunity for thorough data analysis. This misalignment between the project timeline and the scope of the research significantly hindered their ability to engage fully and effectively in the research process. In this regard, one participant quoted:

The duration allocated for the research was so short that we barely had time to finish the data collection, let alone analyze it properly. The timeline was simply not aligned with the scope of the project.

Cultural and Language Barriers

The data within the literature revealed that differences in language, cultural norms, and values significantly impeded the recruitment and retention of diverse participants in healthcare research projects. A prominent issue was the linguistic mismatch between researchers and participants, compounded by the scarcity of bilingual staff and translated materials, which limited accessibility and understanding of research goals, procedures, and benefits. Communication gaps were further widened by jargon-heavy explanations and insufficient translation support, fostering misunderstandings and mistrust. The lack of minority researchers, particularly those matching the racial or ethnic backgrounds of participants, intensified suspicion and cultural misalignment, undermining participants’ willingness to engage. Factors, including difficulty accessing culturally relevant recruitment sites and networks, exclusion of underrepresented groups such as disabled or low-income youth, and tokenistic approaches to engagement, also contributed to these barriers (Gao et al., 2024; Khan et al., 2024; Torres & Tajima, 2024; Vincent et al., 2022; Warraitch et al., 2024; Zibrowski et al., 2021).

The interview data presented lack of shared terminology and mutual understanding among reviewers as a significant barrier. In this regard, researchers experienced challenges when their specialized concepts or methodological approaches were not recognized or valued by reviewers, leading to misunderstandings that adversely impacted the evaluation and acceptance of their work. This disconnection hindered effective communication and often resulted in the rejection of articles, ultimately affecting the overall quality and progress of their research contributions. One participant noted:

For example, I say that adding a flexibility factor to the two-stage model has a significant effect, but for the reviewers, this is not a priority at all. This lack of understanding can lead to my articles being rejected, and it severely affects the quality of my research work.

Perceived Risk and Usefulness:

The data derived from the literature highlighted a complex interplay between motivations and concerns influencing beneficiary participation in healthcare research projects. Participants recognized that involvement could lead to improved patient outcomes, enhanced quality of practice, and advancement of the healthcare profession, which served as key motivators. However, financial inequities, such as unpaid or underpaid roles, and insufficient compensation presented significant deterrents. Among clinicians and researchers, skepticism about consumer involvement was prevalent; some viewed it as politicizing the process or undermining professional expertise, expressing concern that participant input might challenge the legitimacy of professional knowledge. Perceived risks also included fears of physical harm or unknown consequences from experimental interventions, alongside broader suspicions regarding research motives and potential misuse of data. Gatekeepers—such as institutional or clinical authorities—sometimes prioritized their own workload or preferences over participant interests, further restricting access. Additionally, financial disincentives and the absence of tangible benefits or incentives for participants contributed to reluctance. Specific populations, such as individuals with intellectual and developmental disabilities (IDD), were often presumed incapable of consenting or benefiting from research, resulting in exclusion (Boote et al., 2002; Brodeur et al., 2025; Domecq et al., 2014; Gao et al., 2024; Limkakeng et al., 2014; Matheson et al., 2025; Sahin et al., 2014; Torres & Tajima, 2024; Zibrowski et al., 2021).

The interview data highlighted concerns among healthcare researchers regarding their personal credibility, reputation, and academic standing as barriers to participation in research projects. Some researchers were cautious about endorsing work they did not fully understand, fearing potential damage to their professional reputation. Additionally, there was a perception among certain colleagues that research could be exploited for personal financial gain or treated as a business, which was met with disapproval by others who valued research integrity over profit. These attitudes collectively influenced researchers’ willingness to engage fully in projects. One participant remarked:

I told, if I don’t approve this, it’s because I don’t want to risk my reputation. I can’t approve something I don’t know well.

Another participant also stated:

Some colleagues see research as a business and try to profit from it. This approach might be useful for some, but personally, I don’t agree with it.

Personal Motivation and Interest

Intrinsic motivation, including a genuine curiosity about research and an interest in scientific inquiry, was identified within the literature as a strong driver for engagement. Participants who possessed personal interest and enthusiasm for research were more likely to commit and contribute meaningfully. However, motivational deterrents were notable, particularly the lack of robust peer support and research networks, which fostered feelings of isolation and reduced collaborative opportunities. Variations in participants’ skills and training needs, especially among adolescents with competing priorities such as school, also affected motivation. Additionally, emotional burdens related to participating in sensitive research topics sometimes discouraged sustained involvement. Limited prior exposure to research concepts often resulted in hesitation or disinterest, highlighting the importance of education and familiarization to build motivation. These findings align with broader evidence indicating that intrinsic, altruistic, and intellectual motivations significantly influence research participation, while absence of community support and perceived emotional costs can undermine it (Chen et al., 2025; Matheson et al., 2025; Sahin et al., 2014; Torres & Tajima, 2024; Warraitch et al., 2024; Wearn et al., 2025; Zibrowski et al., 2021).

The interview data demonstrated that low motivation among healthcare researchers was a significant barrier to their participation in research projects, primarily due to the absence of effective incentives or recognition systems. Researchers expressed frustration over the lack of feedback or acknowledgment from their departments, which diminished the perceived value of their work and consequently dampened their motivation. Furthermore, the need for continuous professional development and self-empowerment was emphasized, as researchers struggled with inadequate access to workshops and training sessions necessary to keep pace with evolving research methodologies. Additionally, a tendency to prioritize individual goals over collective academic advancement was noted, with some colleagues focusing predominantly on personal publications and promotions rather than collaborative efforts or shared progress. In this regard, one participant quoted:

When I publish something, there’s no feedback or recognition from the department. It feels like my work doesn’t matter, and that kills my motivation.

Another participant stated:

I often feel like I’m lagging behind. There are no proper workshops or training sessions, and it’s hard to keep up with new research methods.

Another participant narrated:

Some colleagues only care about their own publications and promotion. There’s no real interest in collaborative work or shared progress.

Mistrust and Attitudinal Barriers

According to the literature, a pervasive mutual distrust existed between advocates and researchers, often fueled by perceptions that researchers disregarded participants’ input or priorities, leading to frustration and disengagement. Historical and socio-political factors, notably within minority and underserved communities, contributed significantly to pervasive skepticism toward research motives and fears of exploitation or misuse of data. Participants frequently expressed concerns about being treated as “guinea pigs” and questioned the legitimacy of researchers’ intentions, which was compounded by feelings of being marginalized as “guest researchers” or token participants, further eroding trust and confidence. The role of gatekeepers and institutional actors sometimes manifested in dismissive or negative attitudes toward public partners, undermining mutual respect and collaborative relationships. Additionally, high staff turnover disrupted continuity, impairing trust-building efforts over time. Emotional burnout from repeatedly sharing lived experiences diminished willingness to engage, while tokenistic engagement approaches devalued patient contributions and deepened mistrust. These dynamics resulted in a lack of genuine collaboration, with some participation driven instrumentally by access to healthcare rather than authentic partnership. This complex interplay of distrust, skepticism, and attitudinal barriers significantly limited equitable research participation and underscored the need for intentional strategies to foster respect, transparent communication, sustained relationship-building, and culturally sensitive engagement to rebuild trust and enhance inclusivity in healthcare research (Baralt & McCormick, 2010; Brodeur et al., 2025; Domecq et al., 2014; Flynn et al., 2019; Khan et al., 2024; Limkakeng et al., 2014; Matheson et al., 2025; Torres & Tajima, 2024; Vincent et al., 2022; Wearn et al., 2025; Werner et al., 2025; Zibrowski et al., 2021).

The interview data indicated that discouragement caused by low peer engagement and lack of support represented a significant barrier to the participation of healthcare researchers in research projects. Multiple participants experienced emotional distress, including feelings of discouragement, frustration, and a diminished sense of self-worth, often intensified by interpersonal conflicts and personality differences among colleagues. These challenges were compounded by a lack of attentive communication, with some researchers describing instances where their contributions were met with indifference or opposition from peers, further undermining their sense of value within the research environment. Such dynamics not only created emotional obstacles but also hindered collaborative interactions essential for productive research work. One Participant described his experiences as follows:

This is very discouraging and I feel that my work is not properly valued, and this is problematic for me.

Another participant remarked:

One reason I couldn’t connect well with some colleagues was our personality and attitude differences. When I present an idea and feel I face opposition, it becomes very heavy and strange for me.

A third participant shared:

For example, imagine I am explaining a formula, and my colleague in his office is silent and pays no attention to my words. This is very discouraging.

Lack of Clear Policies and Guidelines

Many organizations lacked explicit policies or strategic frameworks to support effective consumer involvement, resulting in limited guidance or established best practice standards for engagement. This absence of clarity extended to unclear role definitions and expectations for public partners, which often led to confusion, frustration, and dissatisfaction, as exemplified by early projects like the Long Island Breast Cancer Study Project. Institutional constraints—including bureaucratic hurdles, rigid protocols, and insufficient training for both researchers and participants—further complicated efforts to organize and sustain participatory activities. Restrictive policies notably excluded certain groups, such as individuals with intellectual and developmental disabilities, from research opportunities, undermining inclusivity. Additionally, the absence of systematic evaluation of consumer involvement policies created uncertainty about their effectiveness and hindered continuous improvement. Transparency deficits in decision-making and unresolved power hierarchies between academic and patient partners weakened trust and collaboration. The scarcity of mentorship and guidance limited participants’ capacity to contribute meaningfully throughout research design, execution, and dissemination (Anderst et al., 2020; Baralt & McCormick, 2010; Boote et al., 2002; Brodeur et al., 2025; Chen et al., 2025; Gao et al., 2024; Matheson et al., 2025; Wearn et al., 2025; Werner et al., 2025; Zibrowski et al., 2021).

The interview data revealed that conflicting regulations regarding teamwork and authorship contributions posed a considerable barrier to healthcare researchers’ participation in research projects. Researchers expressed confusion and frustration over discrepancies between official policies promoting teamwork and the practical realities of authorship credit and performance evaluations. For example, although teamwork was encouraged in principle, the existing point allocation system penalized projects with multiple authors by distributing fewer points per author, thereby discouraging collaborative efforts. This inconsistency between regulations and evaluation criteria led to difficulties in advancing research and fostered a climate where individuals prioritized personal interests over collective progress. A participant articulated these challenges by stating:

When I reach the research deputy, I don’t understand the priorities. Disclosing the model or theory I present doesn’t seem to matter much, and this causes me trouble.

Another participant noted:

There are contradictions in the regulations related to teamwork. For example, while it is claimed that teamwork is important, in the calculation of points, the more authors there are, the fewer points each author receives.

A third participant quoted:

The contradictions in regulations and evaluation systems make progress in research and universities difficult, and people think more about their own interests.

Underreporting and Poor Evaluation

Many research publications failed to explicitly report consumer and community engagement (CCE) activities, partly due to a lack of formal requirements from journals, resulting in underrepresentation of engagement efforts in the literature. Furthermore, there was a notable absence of ongoing, systematic evaluation of the collaborative processes themselves, limiting the ability to identify challenges and improve engagement practices in real time. Where reporting did occur, it was often of poor quality, characterized by minimal measurement of engagement impact and inconsistent documentation. These deficiencies were exacerbated by the complexity and burden of data collection and reporting requirements, which discouraged comprehensive evaluation. The lack of robust evaluation mechanisms hindered the understanding of how consumer engagement influences research quality, relevance, and outcomes (Anderst et al., 2020; Baralt & McCormick, 2010; Domecq et al., 2014; Sahin et al., 2014).

The interview data highlighted that ineffective, non-transparent, and potentially biased evaluation systems were significant barriers to healthcare researchers’ participation in research projects. Researchers expressed confusion and dissatisfaction regarding the criteria used for promotions and assessments, observing that high-quality research efforts often received low scores, while others advanced without commensurate work. This perceived lack of clarity and fairness in evaluation processes undermined researchers’ trust in the system and negatively impacted their motivation and engagement. One participant encapsulated this experience by stating:

Sometimes I don’t even understand based on what criteria people get promoted. You do quality research and still get low scores, while others get ahead without serious work.

Logistical Challenges

Participants experienced difficulties attending meetings and accessing research sites due to limited transportation options, and mobility issues. Studies consistently identified lack of local infrastructure, and workforce shortages created significant obstacles, often leading to lower enrollment and retention rates among rural populations. Additional logistical barriers included the complexity and time demands associated with multiple site-specific approvals and fragmented governance frameworks, which delayed research initiation and continuity. Rural residents also faced social stigma and privacy concerns in small communities, deterring engagement in sensitive health research. Structural issues such as inadequate organizational support, lack of digital infrastructure, and limited integration of research activities within primary care further restricted access (Anderst et al., 2020; Domecq et al., 2014; Khan et al., 2024).

The interview data indicated that overly complex and time-consuming ethical approval processes, combined with administrative errors and poor managerial decision-making, significantly hindered healthcare researchers’ participation in research projects. Researchers described the ethics approval procedures as complicated and prolonged, creating substantial delays that impeded timely progress. This complexity was exacerbated by administrative mistakes and ineffective management judgments which not only wasted valuable time but also jeopardized the success of entire projects and institutions. One participant specifically highlighted the issue, stating:

For my field, we need an ethics code, but this process is very complicated and time-consuming,

Another participant quoted:

We spent 3 or 4 months on this project, and in the end, our university was deprived due to managerial mistakes.

Lack of Resources

The literature underscored that lack of time, funding, and organizational support critically hindered meaningful consumer and researcher participation in healthcare research projects. Both researchers and participants faced significant time constraints, with competing clinical, teaching, and personal responsibilities limiting availability for engagement activities. Funding shortages were pervasive, restricting the ability to sustain participatory efforts, provide adequate compensation, and cover necessary training or logistical costs. Institutional challenges—including bureaucratic gatekeeping, limited staff, and inadequate infrastructure—further exacerbated these issues, creating obstacles particularly notable when attempting to involve specific populations such as adolescents or underrepresented groups. Resource deficiencies also contributed to power imbalances, with insufficient investment in public partner support undermining meaningful involvement. Busy personal schedules, including parenting and work commitments, alongside perceptions of research as too time-consuming or burdensome, led to higher withdrawal rates. Moreover, weak leadership support and underfunded health systems limited the capacity to build a robust culture of engagement (Anderst et al., 2020; Bowness et al., 2024; Brodeur et al., 2025; Chen et al., 2025; Corr et al., 2024; Domecq et al., 2014; Flynn et al., 2019; Gao et al., 2024; Khan et al., 2024; Matheson et al., 2025; Torres & Tajima, 2024; Vincent et al., 2022; Warraitch et al., 2024; Wearn et al., 2025; Werner et al., 2025).

The interview data underscored several financial and resource-related barriers impeding healthcare researchers’ participation in research projects, notably limited access to data and resources due to international sanctions, insufficient institutional funding, inadequate financial compensation for specialized academic work, and overall limited financial resources for research-related expenditures. Researchers reported feeling undervalued, as their analytical and specialized work, such as programming and questionnaire design, often lacked appropriate financial support or recognition. The sanctions exacerbated isolation, forcing some researchers to work independently without collaboration or access to laboratory resources. Further, disparities in funding and compensation were highlighted, with some colleagues receiving fractional support while others received none, adding to perceived inequities. Participants expressed frustration that these financial constraints diminished the perceived worth of their contributions and hindered research productivity. One participant quoted:

As my work is analytical, I have to work alone in my office, and the costs related to my work are not properly covered. I feel that my work is not properly valued, and this is problematic for me,

Another participant stated:

Due to sanctions, access to data and resources is limited. I don’t collaborate with anyone working in the lab, and the nature of my work is such that I have to research alone.

Rigid and Unsupportive Institutions

The literature reported that even in projects with formal structures, such as the Breast Cancer and the Environment Research Centers (BCERCs), advocates and public partners were often excluded from early research design and key decision-making processes, reflecting persistent hierarchies between academic researchers and patient communities. Institutional environments were characterized by inflexible academic and administrative formats, rigid protocols, and bureaucratic hurdles that constrained adaptability and responsiveness to community input. These structural inequalities were compounded when external funders controlled research agendas, reducing local ownership and relevance. Unsupportive institutional cultures frequently failed to provide adequate organizational backing, resources, and infrastructure necessary to facilitate participatory research activities. Negative attitudes within institutions and poorly addressed power imbalances further marginalized consumer voices (Baralt & McCormick, 2010; Bowness et al., 2024; Khan et al., 2024; Matheson et al., 2025; Vincent et al., 2022; Zibrowski et al., 2021).

The interview data identified institutional undervaluation and a lack of recognition for research activities as critical barriers to healthcare researchers’ engagement in research projects. Researchers reported that teaching and administrative duties received more acknowledgment and prestige than scientific research, leading to feelings that their scholarly work was underappreciated. Furthermore, the scoring systems used for performance evaluations discouraged collaborative efforts, as shared authorship in multi-author publications resulted in reduced individual scores. This punitive approach to teamwork impeded collaboration, with some researchers preferring to work alone to maximize their evaluation outcomes. One participant expressed this dilemma:

There’s more recognition for teaching or administrative duties than for actual research. It makes you feel your scientific work is not valued,

Another participant noted:

I often avoid collaborating with others because shared authorship reduces my score in evaluations. It’s just not worth the cost.

Weak Leadership Support

The literature revealed that a lack of strong institutional backing significantly hampered resource allocation and the development of a supportive culture for healthcare research and engagement activities. Leadership challenges included insufficient commitment from institutional leaders, bureaucratic hurdles, and rigid organizational protocols that limited flexibility and responsiveness to participatory research needs. The absence of robust mentorship and professional networks further constrained confidence-building and skill development among researchers and public partners. Effective leadership was identified as crucial for fostering a collaborative environment, securing adequate resources, and overcoming structural barriers in healthcare settings. Studies underscore that well-trained, supported leaders who foster open communication, teamwork, and shared decision-making can enhance workforce capacity, reduce turnover, and align organizational efforts toward inclusive engagement. However, inadequate leadership development and weak executive support remain persistent obstacles, impeding progress and limiting meaningful participation (Chen et al., 2025; Gao et al., 2024; Matheson et al., 2025).

The interview data revealed that the participation of healthcare researchers in research projects was hindered by the use of non-expert reviewers and superficial, hierarchical peer review mechanisms. Researchers reported that reviewers were sometimes not from their specific field, leading to misjudgment of the core ideas and a focus on irrelevant details rather than substantive evaluation. Additionally, the peer review process was occasionally described as perfunctory, conducted merely to fulfill procedural requirements without genuine engagement with the research content. These shortcomings undermined the quality of peer assessments and impeded fair recognition of research contributions. One participant stated:

Sometimes the reviewer doesn’t even belong to the same field. They miss the core idea completely and focus on irrelevant points.

Another participant noted:

Sometimes reviews are done just to check a box. There’s no in-depth engagement with the research content.

Lack of Research Skills and Competencies

The literature reported that many professionals reported feeling insufficiently trained and lacking confidence in research methodologies, which limited their engagement in research projects and reduced their ability to contribute effectively. This lack of familiarity with research processes extended to public partners as well, with some feeling unprepared to participate fully without adequate training and support. Studies highlighted that limited research knowledge, skill deficits, and inadequate institutional training opportunities undermine professionals’ research involvement and capacity-building efforts. Additional barriers tied to this included insufficient mentorship, limited access to statistical expertise, and uncertainties navigating ethics and regulatory procedures. Conversely, positive attitudes toward research and motivation to develop skills were identified as enablers, especially when supported by organizational culture and mentorship programs (Brodeur et al., 2025; Chen et al., 2025; Sahin et al., 2014; Torres & Tajima, 2024; Wearn et al., 2025).

The interview data indicated that a lack of adequate training in research design and methodologies was a significant barrier preventing healthcare researchers from effectively engaging in research projects. Researchers reported insufficient mastery of essential research models and statistical concepts, which hampered their ability to plan, conduct, and analyze studies confidently. This gap in skills and knowledge underscored the need for targeted educational programs and workshops. For instance, one participant admitted:

I don’t have much mastery over models and statistical issues.

Limited Training

Many advocates possessed insufficient scientific training, which undermined their confidence and ability to engage fully in technical discussions, limiting their influence and contribution to research processes. Similarly, researchers often expressed frustration over advocates’ lack of familiarity with research methods, which hindered effective communication and collaboration. The burden of training, combined with logistical challenges such as transportation and attendance requirements, further impeded advocates’ involvement. Additionally, inadequate orientation and preparation for patients and families restricted their effective participation. The scarcity of mentorship and guidance compounded these challenges, leaving advocates without essential support to navigate research design, execution, and dissemination. Research also highlighted insufficient training for researchers in participatory methods and cultural humility, which adversely impacted mutual understanding and engagement quality. Furthermore, poor reporting transparency regarding participatory methods diminished accountability and learning opportunities (Baralt & McCormick, 2010; Bowness et al., 2024; Chen et al., 2025; Domecq et al., 2014; Flynn et al., 2019; Khan et al., 2024; Zibrowski et al., 2021).

The interview data presented that healthcare researchers experienced significant challenges when required to adapt to interdisciplinary or non-laboratory research formats. Individuals with strong laboratory-based backgrounds often felt uncomfortable and uncertain about their roles in conceptual or cross-disciplinary projects, which differ markedly from familiar laboratory environments. This discomfort inhibited their confidence and willingness to contribute, highlighting a need for targeted support and skill development to facilitate smoother transitions into diverse research settings. One participant reflected this barrier by stating:

My background is very lab-based, so when it comes to conceptual or interdisciplinary research, I often feel out of place and unsure how to contribute.

Limited Awareness and Preparation

The literature revealed that a pervasive lack of knowledge and understanding among researchers, gatekeepers, and potential participants significantly hindered effective consumer and community engagement (CCE) in healthcare research. Many researchers were unaware of the benefits of CCE or uncertain about how to engage consumers meaningfully, while gatekeepers often lacked sufficient information about research projects or the capabilities of prospective participants. Misconceptions and misinformation about research risks, especially regarding vulnerable groups such as individuals with intellectual and developmental disabilities (IDD), further impeded participation. Many members of communities, including the Fanconi Anemia (FA) community, were unfamiliar with research processes and the potential advantages of involvement. Poor communication, inconsistent terminology (e.g., patient engagement, participation, involvement), and unclear roles and expectations generated confusion and mistrust. Insufficient training and orientation for patients and families limited their readiness to contribute effectively. This lack of clarity often reduced participants to token roles rather than genuine co-researchers involved throughout all research phases (Anderst et al., 2020; Boote et al., 2002; Brodeur et al., 2025; Flynn et al., 2019; Gao et al., 2024; Torres & Tajima, 2024; Warraitch et al., 2024; Werner et al., 2025).

The interview data presented that insufficient rationale and strategic planning in research proposals was a major barrier affecting healthcare researchers’ participation in projects. Many proposals were reported to be hastily prepared solely to meet submission deadlines, lacking clear justification, coherent research questions, or well-defined strategic directions. This rushed approach resulted in proposals that failed to adequately articulate the significance or purpose of the research, often missing essential elements such as focused problem statements, sound methodology, and meaningful objectives. Such deficiencies diminished the proposals’ quality and chances of approval, ultimately impeding researchers’ ability to secure funding and support. One participant summarized this challenge by stating:

Many proposals are written in a hurry, just to submit something before the deadline. There’s often no clear rationale or strategic direction.

Differences in Paradigms

The literature highlighted fundamental disparities between advocates and scientists regarding the scientific inquiry process, research priorities, and desired outcomes, which posed significant challenges to effective collaboration in healthcare research. Researchers typically concentrated on biomedical and epidemiological data, aiming to advance scientific knowledge, while advocates emphasized broader public health outcomes and policy changes that directly impacted their communities. These divergent perspectives often resulted in misunderstandings and frustration on both sides, as patients raised concerns and priorities that were personally or community-relevant but not always aligned with the scientific goals or feasibility of the research. This misalignment occasionally led to scope creep, where the inclusion of community issues extended beyond the original research objectives, potentially rendering studies impractical or unmanageable. Balancing patient priorities with the constraints and aims of rigorous scientific inquiry remained a persistent challenge, underscoring the need for transparent communication, mutual respect, and negotiation to integrate diverse perspectives effectively (Baralt & McCormick, 2010; Domecq et al., 2014; Flynn et al., 2019; Vincent et al., 2022).

The interview data presented that healthcare researchers faced difficulty in establishing meaningful and sustainable collaborations due to the absence of institutional structures that support long-term teamwork. While researchers might collaborate on isolated occasions, there were no mechanisms or frameworks in place to maintain and nurture ongoing collaborative relationships. This lack of sustained partnership limited opportunities for collective advancement and continuity in research efforts. One participant expressed this challenge succinctly:

There’s no structure that supports long-term collaboration. We might work together once, but there’s nothing to keep the team going.

Research Ethical Concerns

The literature highlighted multiple challenges when involving vulnerable populations, such as children, adolescents, and socially disadvantaged groups, in healthcare research. Ethical issues included power imbalances between researchers and participants, risks to confidentiality, and safeguarding participant safety, particularly regarding emotional distress. Ensuring informed consent proved difficult, especially in time-sensitive or emergency contexts, raising doubts about participants’ autonomy and true understanding of research implications. Additionally, concerns about data privacy, potential misuse, and ethical compromises—such as the suppression of discussions on systemic inequities to maintain research flow—further deterred participation. Vulnerable populations often face heightened risks due to social and structural determinants, necessitating a delicate balance between protecting participants and ensuring equitable inclusion. Ethical guidelines emphasize that vulnerable groups should not be excluded solely because of their status; rather, fair inclusion based on scientific rationale and appropriate safeguards is essential. Researchers must navigate competing ethical principles—respect for persons, beneficence, and justice—while addressing contextual factors influencing vulnerability. Moreover, public involvement with vulnerable groups requires transparent communication, accessible information, and mitigation of burden to empower rather than exploit participants (Flynn et al., 2019; Gao et al., 2024; Limkakeng et al., 2014; Vincent et al., 2022).

Methodological Barriers

The literature presented traditional methodologies, which often prioritize biomedical and epidemiological data collection, can be difficult to reconcile with the inclusive, collaborative principles central to participatory research. Integrating consumer perspectives introduced epistemological challenges that required rethinking knowledge production and validation processes to accommodate diverse stakeholder inputs meaningfully. Recruitment and retention complexities were common, especially when attempting to ensure inclusivity of marginalized or hard-to-reach groups. Participatory research demands flexibility in method selection and design, as collaborative decision-making between researchers and community partners influences every phase of the research cycle—from defining research questions to data collection and dissemination—allowing methods to be tailored to the priorities and contexts of all stakeholders. These methodological adaptations are critical but time-intensive and require negotiating differing expectations and power dynamics (Boote et al., 2002; Bowness et al., 2024; Warraitch et al., 2024).

Power Imbalance

Despite formal participatory frameworks, power sharing is often limited, with researchers retaining predominant control over core aspects such as research questions, methodology, and decision-making processes. This imbalance fosters feelings among participants of being undervalued, ignored, or tokenized, especially for vulnerable groups like children or marginalized communities. The shift toward involving consumers represents a challenge to traditional hierarchies, often resisted by professionals accustomed to entrenched academic authority. Historical and structural inequities, including wealth disparities and colonial legacies, further exacerbate these power differentials, reinforcing marginalization and exclusion (Anderst et al., 2020; Baralt & McCormick, 2010; Boote et al., 2002; Bowness et al., 2024; Flynn et al., 2019; Vincent et al., 2022; Warraitch et al., 2024; Wearn et al., 2025; Werner et al., 2025; Zibrowski et al., 2021).

The interview data presented that pressure to approve or support research proposals based on personal relationships constituted a notable barrier amidst healthcare researchers. Participants described how decisions were sometimes influenced by friendships or social closeness rather than objective evaluation, leading to preferential treatment or biased support. The relational dynamic created sensitivities and ethical dilemmas, wherein researchers felt compelled to adjust their judgments to benefit acquaintances, which compromised the fairness and integrity of the review process. One participant explained:

Unfortunately, it’s become very relationship-based. For example, someone is my friend, you have to be close. Sometimes you become close to certain people and become sensitive. That’s how it is.

Another reflected on the ethical tension:

A colleague called and said, for example, give this a minor revision, do something, but don’t reject it so they can pass. Honestly, I did this for the student. I did this. But for a close colleague, for example, for promotion, I didn’t do this.

Risk of Tokenism

The literature revealed a significant challenge in consumer and community engagement within healthcare research, where involvement is often perceived as superficial or symbolic rather than meaningful and influential. Many researchers expressed concerns that consumer participation might be reduced to a formality without genuine decision-making power, leading to patient input being undervalued and dismissed. This tokenistic engagement undermines trust between researchers and participants, diminishes motivation, and compromises the quality and relevance of research outcomes. Tokenism manifests as inclusion for appearance’s sake, lacking substantive influence on research design, implementation, or dissemination. Such practices risk alienating participants and perpetuating disillusionment with the research process, particularly among marginalized or vulnerable groups (Anderst et al., 2020; Domecq et al., 2014; Flynn et al., 2019; Khan et al., 2024; Warraitch et al., 2024; Wearn et al., 2025; Zibrowski et al., 2021).

Ineligibility and Recruitment Challenges

The literature revealed multifaceted and persistent barriers that impede effective and inclusive participant enrollment, especially among underrepresented populations such as Fanconi Anemia (FA) communities. Recruitment processes are often lengthy, demanding, and can lead to patient frustration, particularly when frequent or invasive visits, rigid eligibility criteria, and inflexible protocols increase participant burden. Geographic dispersion and lack of targeted outreach contribute to the underrepresentation of FA and other rare disease communities, while stigma and misconceptions—such as assumptions about cognitive impairment in psychiatric populations—further undermine engagement. Studies frequently rely on convenience sampling rather than systematic or randomized approaches, which may limit diversity and generalizability. Recruitment efforts often prioritize meeting short-term enrollment targets over building equitable, trusting partnerships, resulting in exclusion of key stakeholders like careers from crucial stages of research. Access barriers, including the absence of safe and inclusive environments and ineffective outreach methods, particularly affect hard-to-reach groups (Bowness et al., 2024; Corr et al., 2024; Domecq et al., 2014; Khan et al., 2024; Torres & Tajima, 2024; Vincent et al., 2022; Werner et al., 2025; Zibrowski et al., 2021).