The scale of the undertaking is itself remarkable. The research team, led by Sarah Scruton and colleagues affiliated with the Marathon of Hope Cancer Centres Network Patient Voices Initiative, searched five databases spanning Ovid MEDLINE, PubMed, Scopus, CINAHL Complete and Web of Science, retrieving 7,918 candidate studies. After rigorous screening calibrated with statistical agreement measures, 131 studies published between 1979 and 2026 met their criteria. Roughly half were conducted in the United States, with the remainder scattered across the United Kingdom, Canada, Australia, China, Denmark, South Korea and beyond. Most focused exclusively on patients rather than caregivers, and more than half included participants who had declined or never been offered a trial, giving the review a rare window into the minds of the hesitant rather than only the committed.

The dominant barrier, reported in all but five of the included studies, was psychosocial. Fear in its many forms topped the list: fear of side effects from experimental treatments appeared in nearly 62 percent of studies, fear of being experimented on, the so-called guinea pig phenomenon, in just under 52 percent, and fear of randomization in about 41 percent. The dread of receiving a placebo or sugar pill was specifically voiced in 22 studies. In one breast cancer cohort, 44.7 percent of women who declined a trial said random assignment would discourage them, compared with just 12.4 percent of those who accepted. Among adolescent and young adult patients, qualitative work revealed a deeper anxiety: the fear of decisional regret if randomization assigned them to an inferior treatment arm, with parents shouldering the blame.

Distrust emerged as a second psychosocial pillar, reported in 37.4 percent of studies. Participants questioned whether research served their interests or those of physicians, pharmaceutical companies and career-minded investigators. In a Danish study, 34 percent of trial participants and 23 percent of non-participants agreed that medical research primarily promotes doctors’ careers. More strikingly, 17 studies documented distrust rooted in historical abuse, particularly among Black and Hispanic participants and older adults, with the Tuskegee Syphilis Study cited explicitly as a touchstone of medical betrayal. This legacy of racism in medicine continues to shape willingness to enroll, a finding the authors argue demands relationship-building and transparency rather than simple reassurance.

Logistical burdens formed the second major theme, raised in 73.3 percent of studies. Travel to trial sites, out-of-pocket costs, extra hospital visits and tests, time off work, and strain on family members all weighed heavily. In one Australian survey, 54 percent of patients said they would not join a trial if any out-of-pocket costs were involved, and 57 percent said they would refuse if it required changing oncologists. Among older adults, 82.7 percent identified needing care from family or friends as a barrier. Caregivers described relocating to be closer to cancer centers and absorbing the scheduling demands of appointments, yet fewer than 10 percent of the included studies captured their perspectives at all, a gap the review identifies as significant given caregivers’ central role in transportation, medication adherence and decision-making support.

Informational barriers, reported in 68.7 percent of studies, proved equally pervasive. Patients frequently did not know relevant trials existed, with 12 studies reporting that physicians never discussed trials as an option. Those who searched on their own found the process confusing and overwhelming; in one UK study of patients with secondary breast cancer, 53 percent of those who consulted a trial registry could not find the information they needed. Misconceptions about trial purpose and randomization were widespread, with one study reporting that 94.2 percent of trial refusers lacked understanding of the trial’s goal. Consent forms were described as lengthy, complex and intimidating, and language barriers compounded the problem for Asian American and Hispanic patients, one of whom ranked language as the second-highest obstacle to participation.

The interplay between fear and information emerged as perhaps the review’s most consequential insight. The authors note that fear-based and informational barriers often co-occurred, suggesting that limited understanding may fuel anxiety about experimental treatments, and that health literacy may explain the relationship, since trial awareness and participation are consistently higher among more educated individuals. If fears stem from missing or muddled information, they may be mitigated by clear, accessible communication, a hypothesis supported by prior evidence that web-based education programs, decision aids and simplified consent materials improve knowledge and foster more positive attitudes toward participation across health literacy levels.

Patients themselves offered a roadmap for improvement. Clear, credible and accessible information was the most commonly recommended facilitator, cited in 42 percent of studies, including plain-language consent forms, multiple information formats and centralized trial databases. Building trust came second, with participants emphasizing conversations with knowledgeable, respectful providers, and for racialized groups, research teams that share their ethnicity. Logistical supports ranked third: expense reimbursement, transportation and lodging, childcare, telehealth options and flexible scheduling. Some participants suggested trial designs granting more autonomy, and others called for mental health, spiritual or peer support during participation.

The review’s limitations are acknowledged candidly. Most studies did not specify trial phase or intervention type, limiting conclusions about which barriers dominate in early-phase versus late-phase research. Nearly half the literature is American, raising questions about transferability to other healthcare systems. Few studies compared barriers across racial or ethnic groups despite documented disparities in trial access, and none systematically examined how geography, income or education shape participation decisions. The authors also note that their review, consistent with scoping methodology, mapped the evidence rather than appraising its methodological quality.

Nevertheless, the synthesis arrives with clear implications. Structural solutions already exist in pockets: Canada’s ULink and Hope Air programs assist with travel and lodging, the Canadian Remote Access Framework for Clinical Trials guides delivery to rural patients through satellite centers, and Australia’s Tele-Trial Model brings trial procedures closer to home. What the review adds is the patient’s own voice, systematically assembled, arguing that recruitment will not improve through persuasion alone but through redesigned trials that respect fear, honor distrust, lighten logistical loads and speak plainly. As precision oncology expands the menu of targeted therapies, the bottleneck may no longer be scientific discovery but the human architecture of participation itself.

Subject of Research: Barriers to cancer clinical trial participation reported by patients and caregivers

Article Title: Patient and Caregiver Reported Barriers to Cancer Clinical Trial Participation: A Scoping Review

Article References: Scruton, S., Ito, C., Bohnen, J., Urquhart, R., Hessels, C., Konechny, S., Kraft, R., Thompson, R., Ho, C., Weymann, D., Bombard, Y., Krebs, E., Denburg, A., Hanna, T. P., Lim, H. J., Shareen, S., Regier, D. A., & Pollard, S. (2026). Patient and Caregiver Reported Barriers to Cancer Clinical Trial Participation: A Scoping Review. Cancer Reports, 9(10), Article e70700. https://doi.org/10.1002/cnr2.70700

Image Credits: AI Generated

DOI: 10.1002/cnr2.70700

Keywords: cancer clinical trials, patient barriers, caregivers, scoping review, psychosocial barriers, distrust in medicine, health literacy, informed consent, precision oncology, trial recruitment, health equity, logistical barriers

The study, published in BMC Health Services Research, took an unusual and much-needed angle. While earlier research has focused heavily on why patients themselves fail to complete colonoscopy after an abnormal screening result, comparatively little attention has been paid to the people who run the screening pipeline: the physicians, nurses, clinic managers, and administrative staff who guide patients from a positive stool test to the endoscopy suite. Understanding their perspective matters because the journey from FIT to colonoscopy is a chain of handoffs involving primary care clinics, central triage systems, hospital endoscopy units, and electronic health records, and a weak link anywhere in that chain can silently drop a patient out of the system.

To capture that perspective, the team conducted a qualitative descriptive study using semi-structured interviews with healthcare providers involved in colonoscopy follow-up across Alberta, a province whose geography ranges from dense urban centers like Calgary and Edmonton to vast rural and remote regions. Participants were purposively recruited, supplemented by snowball sampling in which early interviewees helped identify further relevant colleagues, until seventeen providers had taken part. The interviews were conducted virtually, audio-recorded, transcribed, and then analyzed using a combined inductive and deductive thematic approach, meaning the researchers both allowed new themes to emerge from the data and tested them against established theory.

That theoretical scaffolding is where the study gains much of its analytical power. The researchers mapped their findings onto two widely used implementation science frameworks. At the individual level, they applied the Capability, Opportunity, Motivation–Behaviour model, known as COM-B, together with the Theoretical Domains Framework, which decompose behavior into what people are able to do, what their environment allows them to do, and what drives them to do it. At the health system level, they used the Consolidated Framework for Implementation Research 2.0, or CFIR 2.0, which organizes the structural, cultural, and resource characteristics of health systems that shape whether evidence-based practices actually get delivered. This dual mapping allowed the team to translate messy, real-world accounts into actionable categories that intervention designers can target.

The headline finding is striking in its simplicity: the most important barriers to colonoscopy completion occur before the procedure ever takes place. At the patient level, providers described people who did not fully understand what a positive FIT result meant or what a colonoscopy involved, a knowledge gap that can leave an abnormal result feeling abstract rather than urgent. Fear and anxiety about the procedure itself, from the bowel preparation to the sedation to the possibility of a cancer diagnosis, weighed heavily on some patients. Others faced competing life responsibilities, socio-economic constraints, and practical challenges around transportation, travel distances, and the lack of a friend or family member to accompany them, all of which can make an elective procedure feel impossible to schedule even when the medical stakes are high.

Perhaps more surprising are the barriers that providers located within their own profession and within the health system itself. Some clinicians, the study found, used the FIT inappropriately, for example deploying it in contexts where it is not the right tool, which can muddy the follow-up pathway. Gaps in knowledge about colorectal cancer screening pathways were also reported among providers, meaning some positive results may not be routed to colonoscopy as efficiently as guidelines intend. Clinics had limited resources to support patient follow-up, and the episodic nature of walk-in clinic care posed a particular challenge: when a patient sees a different provider at every visit, no single clinician may feel ownership over ensuring that a positive screening test gets acted upon, and continuity of care, a known driver of preventive care completion, breaks down.

At the system level, the picture grew more complex still. Alberta’s geography creates real inequities, with patients in rural and remote areas facing longer travel for procedures concentrated in urban centers. Referral and triage models varied across the province, so the speed and reliability of the path from positive FIT to booked colonoscopy depended on where a patient lived. The province’s electronic health record system, Connect Care, had limitations that complicated follow-up workflows, and staffing and space constraints limited endoscopy capacity. In some regions, communication gaps between primary care teams and hospital teams meant that information about positive results and completed follow-ups did not always flow smoothly between the parts of the system that needed it.

Yet the study is not simply a catalogue of failures. Providers also identified facilitators that are already working or could be scaled up. System navigation support, in which dedicated staff help patients overcome logistical and informational hurdles, emerged as a key enabler of completion. Patient education, delivered clearly and early, helps transform an alarming result into an understood and actionable one. Reminder systems prompt both patients and clinics to keep follow-up on track. Virtual consultations reduce the burden of travel and time off work, particularly valuable across a province as large as Alberta. And centralized intake and triage models, which route referrals through a coordinated hub rather than leaving each clinic to manage its own pipeline, offer a structural fix for the variability that providers described.

The implications reach well beyond Alberta. Organized screening programs across Canada, the United Kingdom, Australia, and much of Europe rely on stool-based tests as their entry point, and every one of them faces the same downstream challenge: converting abnormal results into completed diagnostic procedures. The Alberta study suggests that programs that measure only screening participation rates may be missing the point where lives are actually saved or lost, in the interval between a positive test and the colonoscopy that follows it. The finding that pre-procedure barriers dominate is a call to redirect quality-improvement energy toward that interval, with interventions that are coordinated across patient, provider, and system levels rather than aimed at a single point of failure.

The multi-level framing is also the study’s central methodological lesson. By anchoring provider accounts in COM-B, the Theoretical Domains Framework, and CFIR 2.0, the researchers demonstrated how implementation science can turn qualitative interviews into a structured map of intervention targets: education and reassurance for patients, knowledge support and follow-up resources for providers, and integrated referral, triage, and communication infrastructure for the system. The authors conclude that addressing these barriers requires coordinated, multi-level, and regionally tailored strategies that strengthen patient education, provider support, and system integration. In a field where a missed colonoscopy can mean a missed opportunity to catch cancer at a curable stage, that conclusion is less an academic abstraction than a practical blueprint, and one that screening programs everywhere would do well to study. The research was funded by Alberta Health, approved by the Health Research Ethics Board of Alberta, and is available open access for clinicians, program designers, and policymakers who want to examine the full detail of what providers on the screening front lines had to say.

Subject of Research: Barriers and facilitators to completing follow-up colonoscopy after a positive fecal immunochemical test in Alberta's colorectal cancer screening program

Article Title: Barriers and facilitators to colonoscopy completion after FIT + in Alberta: a qualitative description of healthcare providers’ perspectives

Article References: Mah, S., Teare, G. F., Campbell, M., & Adhikari, K. (2026). Barriers and facilitators to colonoscopy completion after FIT + in Alberta: a qualitative description of healthcare providers’ perspectives. BMC Health Services Research. https://doi.org/10.1186/s12913-026-15718-1

Image Credits: AI Generated

DOI: 10.1186/s12913-026-15718-1

Keywords: colorectal cancer screening, colonoscopy, fecal immunochemical test, healthcare providers, implementation science, COM-B, Theoretical Domains Framework, CFIR 2.0, health services research, Alberta, patient barriers, centralized triage

The research, led by Lintang Dian Saraswati of Queensland University of Technology and Diponegoro University, together with colleagues in Australia and Indonesia, focused on the Collaborative Framework for the Care and Control of Tuberculosis and Diabetes, a strategy Indonesia adopted in 2015. Detailed standard operating procedures followed in 2021, specifying that people with diabetes should receive chest X-ray screening for tuberculosis as part of their regular care. Yet little was known about how the patients themselves experience this screening, and that gap is precisely what the team set out to fill.

Between August and November 2023, the researchers conducted three focus group discussions involving eighteen participants and two in-depth interviews in Semarang City and Klaten District in Central Java. Participants were recruited purposively from both hospital and non-hospital settings, capturing perspectives from patients navigating different tiers of the Indonesian health system. Semi-structured guides with open-ended questions allowed respondents to describe their journeys through screening in their own terms, from the first referral slip to the moment the X-ray image was taken.

To make sense of the transcripts, the team applied a hybrid deductive-inductive thematic analysis anchored in the Health Belief Model, a classic psychological framework that explains health behaviour through perceived susceptibility, perceived severity, perceived benefits, perceived barriers, cues to action and self-efficacy. This approach let the researchers test whether the model’s constructs emerged in patients’ accounts while remaining open to themes the framework did not predict. The result is a layered map of the psychological and practical terrain a diabetic patient must cross before an X-ray actually happens.

The study’s central finding is that personal health beliefs and interpersonal support are the engine of participation. Patients who understood that diabetes silently raises their tuberculosis risk, and who felt encouraged by family members or trusted health workers, were far more willing to undergo screening. Cues to action, such as a nurse’s reminder or a relative’s insistence, often tipped the balance toward attendance. In the language of the Health Belief Model, perceived susceptibility and perceived benefit had to be activated by social reinforcement before they translated into behaviour.

Against those facilitators stood a cluster of structural barriers that no amount of personal motivation could easily overcome. Many participants had limited awareness of tuberculosis symptoms and, crucially, of the biological link between the two diseases, meaning they saw no reason to be screened when they felt well. Fear of nosocomial infection, the worry that visiting a clinic or hospital to prevent one disease might expose them to another, emerged as a particularly potent deterrent in the aftermath of a pandemic that made waiting rooms feel hazardous. Logistical challenges, including travel to facilities and time away from work, compounded the reluctance.

Financial concerns formed a second axis of inequity, but in a way that surprised the researchers. Indonesia’s Social Security Agency on Health, known as BPJS, covers the cost of screening for enrolled patients, dramatically reducing direct out-of-pocket expenditure. Yet participants described administrative and referral-related burdens that consumed time and patience: paperwork, queues, and the requirement to move through a hierarchy of first-level facilities before reaching secondary care. Paradoxically, the two self-funded participants in the study reported greater flexibility in accessing services, hopping directly to convenient providers, although the authors caution that these accounts should be interpreted as illustrative rather than representative, given the tiny number of such respondents.

The technical logic behind the programme is sound. Chest radiography can detect pulmonary tuberculosis in people who produce no sputum and report no cough, which is exactly the profile of many diabetic patients whose immune suppression blunts the classic symptoms of the disease. Systematic screening of this high-risk group is a cornerstone of the World Health Organization’s framework for collaborative tuberculosis-diabetes care, because every case caught early interrupts a transmission chain and prevents the catastrophic costs of late diagnosis. Indonesia’s 2021 standard operating procedure was designed to make such screening routine rather than opportunistic, embedding it in the chronic-care visits that diabetic patients already attend.

What the new study demonstrates is that a technically elegant procedure lives or dies at the level of human experience. A patient who fears the clinic, cannot decode the referral system, or does not grasp why an asymptomatic person needs a lung image will simply not arrive, no matter how sophisticated the radiography equipment waiting for them. The authors argue that health systems should therefore launch targeted educational campaigns that address two specific gaps: the risk posed by asymptomatic tuberculosis in diabetic patients, and the exaggerated fear of catching infection inside health facilities. They further recommend streamlining bureaucratic referral processes so that coverage on paper translates into equitable access in practice.

The findings carry weight far beyond Central Java. The twin epidemics of tuberculosis and diabetes intersect across South Asia, Southeast Asia and sub-Saharan Africa, and collaborative screening programmes are being rolled out in many of the same high-burden settings. By grounding programme evaluation in patients’ perspectives rather than administrative statistics, the study offers a template for implementation science: identify the beliefs that motivate, the fears that paralyse, and the paperwork that exhausts, then redesign the pathway around them. For Indonesia’s national programme, the message is clear. The X-ray machines are in place and the insurance coverage exists; the remaining task is to make the journey to the screening table feel safe, understandable and worth every patient’s time.

Subject of Research: Patient perspectives on chest X-ray tuberculosis screening within Indonesia's collaborative tuberculosis-diabetes programme

Article Title: Barrier and facilitator for chest X-ray tuberculosis-diabetes mellitus (CXR TB-DM) programme from patient’s perspective: a qualitative study

Article References: Saraswati, L. D., Pardosi, J. F., Widjanarko, B., & Gatton, M. L. (2026). Barrier and facilitator for chest X-ray tuberculosis-diabetes mellitus (CXR TB-DM) programme from patient’s perspective: a qualitative study. BMC Infectious Diseases. https://doi.org/10.1186/s12879-026-14427-8

Image Credits: AI Generated

DOI: 10.1186/s12879-026-14427-8

Keywords: tuberculosis, diabetes mellitus, chest X-ray screening, Indonesia, health belief model, qualitative research, BPJS, nosocomial infection, health systems, patient barriers, Central Java, public health