Abstract
Disparities in breast cancer care access and outcomes are persistent and globally recognized issues driven by a complex interplay of socioeconomic, geographical, and systemic factors. Given the complex psychosocial effects on this patient group, it is crucial to incorporate Patient and Public Involvement and Engagement (PPIE) into care models. PPIE is a collaborative approach that involves patients, caregivers, and community members. It engages diverse populations and addresses the needs of underrepresented and disadvantaged groups, thereby promoting health equity. However, the multifaceted connection between health equity and PPIE programs must be strengthened. This narrative review critically explores research and organizational models that describe how PPIE informs health equity in breast cancer care. Our focus is on adaptability: as patient needs, treatments, and technologies evolve, so must the strategies employed to ensure equitable care. We discuss how PPIE is crucial for tailoring efforts to provide equity in two areas of intervention: community-driven and data and targeted-driven approaches. Integrating PPIE into flexible organizational models and research projects has emerged as a critical driver for achieving health equity in breast cancer care in both areas. Community-led initiatives ensure that interventions are culturally relevant and address fundamental social determinants of health. Conversely, data-driven approaches provide the evidence needed to target resources effectively and measure progress. Advancing PPIE reporting in rigorous study designs is the first step to ensuring effective and reproducible implementation. Furthermore, the models’ adaptive features may reduce health inequities, increasing their reach, and strengthening community collaborations.
Plain Language Summary
PPIE can address several reasons for inequities in breast cancer care, such as a lack of health literacy, supportive infrastructure and policy priority. Regardless of whether the initial approach was more community- or data-oriented, PPIE has informed health equity by promoting the dynamism and appropriateness of interventions, and by revealing actionable barriers. These models emphasise bottom-up participation, multi-stakeholder partnerships, co-designed projects and the use of health data and targets to build equity. Advancing PPIE reporting in rigorous study designs is the first step to ensuring effective and reproducible implementation. Furthermore, the models' adaptive features may reduce health inequities, increasing their reach, and strengthening community collaborations.
Keywords
Introduction
Breast Cancer represents a significant and pervasive global health challenge. 1 In 2022, it was the most common cancer diagnosed in women in 157 out of 185 countries, underscoring its worldwide impact. 1 Countries with robust healthcare systems and dedicated programs have successfully achieved annual mortality reductions of 2–4%, primarily through effective early detection, timely diagnosis, and advanced treatment protocols. 1 However, this progress is not shared equally, and global estimates reveal striking inequities in the breast cancer burden.1-3 A stark divide exists between High-Income Countries (HICs) and Low- and Middle-Income Countries (LMICs).1,4-6 While age-standardized breast cancer mortality in HICs dropped by 40% between the 1980s and 2020, many LMICs continue to face rising incidence coupled with high mortality rates. 7 This disparity is evident by 5-year survival rates, which exceed 90% in most HICs but fall to 66% in India and as low as 40% in South Africa, 7 highlighting the urgent need for targeted interventions. These elements eventually emphasize inequities in survivorship care, necessitating multi-level efforts to expand access to high-quality survivorship resources. 8 High breast cancer survival rates are also linked to strong health systems with comprehensive coverage and accessible services. 7 In fact, significant disparities are caused by several factors, including structural and social inequities. 9 Practices related to structural racism - defined as the macro-level systems, policies and practices that institutionalize racial discrimination in different areas such as education, employment, earnings, and healthcare 10 - are connected to later-stage diagnoses and higher mortality rates, with these effects varying by race and location. 11 Regarding accessibility, women with disabilities face significant challenges. One study found 54.4% considered facilities only partially accessible, and 62.5% faced barriers to screening services. 12 Disparities also exist within countries, as shown in a Brazilian study where the private healthcare system had better 5- and 10-year survival rates than the public system. 13 Overcoming these social inequalities requires targeted health policies and collaborative efforts between healthcare providers, policymakers, and advocates to improve prevention and education. 11
Cancer survival rates are improving in most European countries. 14 However, this success hides deep and persistent inequalities driven by a complex interplay of socioeconomic, geographical, and systemic factors. 14 In 2019, self-reported screening coverage among women aged 50–69 varied tenfold across EU countries. 15 The highest participation rates were observed in Nordic nations, such as Denmark and Finland, while the lowest rates were seen in Eastern European countries, including Romania and Bulgaria. 15 This disparity in access to early detection programs directly contributes to disparities in outcomes, accounting for a significant portion of the 20-percentage point difference in five-year survival rates observed between different European countries. 15 LMICs tend to have less efficient general organization in prevention programs. 16 In this context, health literacy initiatives are crucial. 14 Socioeconomic status and education also play a role: breast screening participation is approximately 25% higher among high-income women than among low-income women. 15 Furthermore, access to care is often dependent on location, with individuals in rural or remote areas facing greater challenges in accessing specialized diagnostic and treatment facilities than those in urban areas. 14 Proven interventions that could mitigate this barrier include patient navigation programs to guide individuals through complex healthcare pathways and the early integration of multidisciplinary teams. 1 Policy decisions also fuel inequities. 14 There is a significant risk that the latest therapeutic innovations will only be affordable for wealthier EU member states, thereby widening the gap in patient outcomes. 14 Furthermore, slow and inconsistent reimbursement processes for novel drugs across the EU create barriers to accessing state-of-the-art care. 17 Finally, the availability and competence of health professionals, along with solid technological support infrastructure, are equally important. 14
Reducing health disparities should be a priority for health decision-makers 18 : avoidable survival inequalities constitute health inequities, 19 necessitating their alleviation from both moral and legal perspectives.20,21 Twenty projects targeting cancer-related health disparities are currently active in Europe 17 : addressing these inequities requires multi-level strategies focused on building and testing resilient and adaptive health systems.14,22-24 In this vision, there is a growing consensus that the active involvement of patients in all aspects of care, from design to evaluation, is not just beneficial, but fundamental to achieving equitable outcomes for all. Breast cancer has broader societal implications, a profound impact on the lives of women and the European economy. The psychological and physical toll of diagnosis and treatment can significantly affect a woman’s sense of identity, her relationships, and her professional life.25-29 The economic consequences are equally severe, with the productivity loss associated with breast cancer in Europe estimated at €7 billion. 30 Furthermore, up to 53% of survivors do not return to their previous employment, resulting in substantial financial hardship for individuals and their families. 30 Given the complex psychosocial effects of this cancer population, it is crucial for health professionals to recognize the value of PPIE and include it in the care models. 23 The concept of Patient and Public Involvement and Engagement (PPIE) has evolved and extended over time, with efforts being made to clarify it. 31 PPIE is a collaborative model that involves patients, caregivers, and community members. The model emphasizes sustained partnerships, shared contributions, equitable power distribution, and active involvement throughout the research process. 31 PPIE has strong roots in history and it engages with diverse populations and addresses the needs of underrepresented and disadvantaged groups, promoting health equity. 32 Nevertheless, the multifaceted connection between principles such as health equity and PPIE programs needs to be strengthened. 33 PPIE is also an integral aspect of participatory action research and community‐based participatory research. The field of oncology represents favorable ground for PPIE applications 32 : PPIE empowers us to address the rapidly changing needs and priorities of a growing population affected by cancer. Yet, despite its significance, our current approaches to PPIE lack the cohesion and critical reflection required for meaningful progress. 32
This paper critically explores research and organizational models that describe how PPIE informs health equity in breast cancer care. Our perspective centers on adaptability: patients and survivors’ health needs may change over time, as treatments, technologies, and society evolve. PPIE’s capacity to adapt care to different contexts addresses several of the health equity arguments, such as health literacy, geographical barriers, and policy-related issues.
Methods
This review is guided by the Scale for the Assessment of Narrative Review Articles (SANRA). 34 We included primary literature on research and organizational models that describe how PPIE informs health equity in breast cancer care. Articles not written in English, conference abstracts, and theses were considered ineligible publication types and excluded. Pubmed and Cinahl databases were searched between July and September 2025. The search strategy included the main keywords “Health Equity”, “Patient Participation”, “Public Participation”, “Breast Cancer”, and “Models of care”, which were adapted as necessary. The quality of the studies was assessed through appropriate checklists according to the Enhancing the QUAlity and Transparency Of health Research (EQUATOR) network. Results were analyzed following a thematic deductive-inductive approach and presented narratively.
Results
Of the eighteen full texts screened, seven projects were identified. PPIE was crucial in tailoring efforts to provide equity across the two intervention areas of community-driven approaches (N = 4) and data- and target-driven approaches (N = 3).
Community-Driven Models
Community-driven models are a powerful tool in the fight against health disparities. A fully participatory community engagement program should begin with patients, academic institutions, healthcare providers, and community organizations. They are all protagonists in research and education initiatives aimed at reducing health disparities. The studies described below demonstrate the importance of adaptable approaches that are tailored to the unique needs of each community.
In response to rapid changes in health challenges in the United States in 2016, the first project engaged multiple sectors and community partners. 35 The Public Health 3.0 model focused on improving the social determinants of health, including neighborhood and physical environment, economic stability, healthcare, and community and social context support systems. 35 A subsequent systematic review confirmed that interventions addressing social determinants of health to improve breast, cervical, and colorectal cancer screening appear to be cost-effective for vulnerable populations in the United States. 36 Breast cancer patients participated in initiatives, including transportation assistance for screening appointments, vouchers or free screening services, cash incentives for completing screening, and health literacy programs. 36 Understanding dynamic, multifactorial interactions is crucial to addressing these determinants. Multilevel partnership models are essential for intervention planning, particularly when community-level stakeholders are integrated with academic and health policy actors. The education domain was not addressed in the included studies, suggesting the need for further investigation. In the Brazilian study cited previously, 13 education was identified as an area for public health to focus on, to reinforce prevention and care. Community engagement requires long-term, systems-focused investment. 37 Broadening the focus, another U.S. experience made education central to promoting cancer health equity and reducing cancer disparities. 38 A shared governance model was established in Chicago between cancer centers and universities, involving administration, research, education, planning and evaluation, and community engagement. 39 A team comprising more than 30 community organizations represented the city’s most vulnerable communities. The team developed and maintained meaningful community partnerships, and ensured community representation, integrating community members into activities. 38 Guiding principles included disseminating results at professional and community events and supporting cancer prevention by facilitating access to community services. 38 This compelling example shows how effective community engagement requires a sustained, systems-oriented investment that fosters genuine collaboration.
The projects mentioned frequently addressed the issue of cancer prevention. Nevertheless, equally important is the evolving landscape of survivorship care within the PPIE framework. Bouchard et al developed a mHealth intervention tailored for Latina breast cancer survivors that enhances psychosocial adaptation after breast cancer, improves cancer knowledge, implements stress management skills, and improves communication with friends, family, and oncology providers. 40 Such studies underscore the importance of tailored interventions for specific populations, demonstrating how adaptable strategies can enhance survivorship care. A flexible and targeted approach would also reinforce the development of tools. If the survivorship care tools cannot generate accurate estimates for specific subgroups of the population this could lead to disparities in cancer care. 41 A lack of representation in validation samples could limit the ability to assess the performance of these tools in diverse settings. 41 The validation samples for tools used with breast cancer survivors in studies included in one review mainly comprised White, married, and insured populations. 41 Notably, innovative models of care that consider community characteristics and needs are promising regarding optimal timing, resourcing, and cost-effectiveness, and can be studied with robust study designs. 42 For example, in Canada, the different regions in Ontario have adopted various models to facilitate the transition of breast cancer survivors from oncology-led to community-focused care, 43 including direct-to-primary-care, transition clinics, and shared care. The role of healthcare professionals, particularly nurses, was highlighted in empowering cancer survivors to engage actively with community resources for emotional and physical recovery actively was crucial. 42 Active engagement in PPIE is fundamental. The last project of this section presents a co-designed framework for patient partnership that promotes bottom-up action for health equity 44 : the community-driven model promotes equity through patient engagement, by co-building sustainable and safe spaces, addressing accessibility issues, building capacity one relationship at a time, and inviting patient partners to contribute their perspectives on areas of study in healthcare spaces. 44 Moreover, the Power Wheel tool was applied as a conceptual instrument for analyzing the ability of patient partners to influence health decision-makers 45 ; it focuses on how relations of influence operate in patient engagement. Health equity can be assessed and improved by determining which levels and relationships in shared decision-making are open for discussion. 45 The studies described were primarily conducted in the Americas, highlighting the need for future research on European models and policies, since healthcare systems influence access to cancer care. Further research should explore the relationships between PPI implementation and health equity in breast cancer care across different national health systems in Europe.
In synthesis, community-driven models represent a systemic shift in tackling health disparities, focusing on social determinants of health such as economic stability, transport, and health literacy. A shared approach assures that interventions, particularly those relating to cancer screening and prevention, are cost-effective and consistent with the cultural needs of vulnerable populations. However, the transition to these participatory models underscores notable disparities in representation and geographical coverage, particularly regarding cancer survivorship and digital health tools. Furthermore, there is an urgent need to explore how these bottom-up frameworks might be adapted to European national health systems.
Data and Target-Driven Models
Stakeholder- and data-driven implementation processes are promising approaches to advancing health equity. The model proposed by Aschbrenner et al provides a stakeholder and data-driven approach to identifying and prioritizing health equity targets and guiding adaptations to improve implementation and health outcomes. 46 In summary, an external facilitator collaborated with healthcare professionals to use data from a population health management system linked to electronic health records to identify patient subgroups that experienced gaps in cancer screening outreach and completion. Once these gaps had been prioritized as health equity targets, the external facilitator guided internal implementation teams in rapidly adapting, implementing, and evaluating the adaptations required to address the inequities. 46 The stakeholder engagement was crucial because professionals may have access to patient advisory boards that can provide input on the specific adaptations needed to improve care. 46 Patients’ care pathways and related informatics systems are pivotal in integrating new approaches to cancer care. For example, patients’ decision-support tools should more consistently consider quality of life and individual preferences, but adapting existing frameworks to incorporate these dimensions is challenging. The second project considered for this section is a European project called 4D PICTURE: it aims to redesign patients’ care pathways and to develop and integrate evidence-based decision-support tools to improve decision-making processes in cancer care delivery. 47 The involvement of patients and the public was central to the project’s planning. They would work alongside researchers to develop the agenda, design and conduct the research, and interpret and disseminate the findings. It involved the development of an artificial intelligence (AI)-based conversational tool, using citizen science techniques and linguistics. 47 The tool incorporates large datasets of patient experiences, values, and preferences. As stakeholders in health equity, healthcare professionals play a crucial role in these data-driven strategies by prioritizing patient groups based on their practical knowledge and understanding of local contexts; they can offer valuable insights not only in designing adaptations, 48 but also building consensus on health equity targets.
The literature affirms the need for strategies to identify health equity targets and to design and test promising adaptations rapidly to address avoidable disparities in access and outcomes. 46 Montel et al identified equity targets for breast cancer through a Delphi study. 4 Considerable attention was paid during the study to maintaining a ‘person-centered’ approach, focusing on effective communication and involvement in decision-making. 4 As previously noted, 41 it is important that this approach is also present when developing indicators and tools: their orientation towards PPIE principles enables real-life information to be collected properly and systematically. Their selected indicators included a formal recognition of the right to health in breast cancer strategies; a population-based screening program and a prompt diagnosis; a strong referral system; limited waiting times; the provision of palliative care and the attention to survivors’ quality of life; the availability, accessibility, acceptability, and quality of breast cancer services and medicines; a system of accountability. 4 In conclusion, strategies to close equity gaps in access to care should include expanding insurance coverage and running community outreach programs, such as mobile mammography units. 49 Transportation insecurity is a significant barrier to accessing healthcare, particularly for low-income and rural populations. Patient navigation services improve treatment adherence, reduce care delays, and enhance satisfaction, particularly among minority and low-income women. 49 Furthermore, community-based educational programs are an effective, low-cost strategy for raising awareness of breast cancer screening and reducing screening-related anxiety. Cultural inclusivity is crucial for raising awareness, particularly among spiritual and LGBTQIA+ populations, to reduce health disparities and improve outcomes. 49
In synthesis, data-driven models use health management systems to find patient groups facing barriers to cancer care. With facilitators and AI tools, researchers add patient experience and language data to clinical decision-making. This makes sure technology reflects real-world needs and connects big data to local care. Still, data must go with cultural inclusion and focused education for true equity. It is essential for stakeholders to actively implement inclusive strategies and educational initiatives to drive equity in cancer care.
Discussion
The objective of this paper was to provide a reflective analysis of organizational models that describe PPIE and its role in promoting health equity in breast cancer care. The analysis examined how PPIE is essential for customizing efforts across community-driven and data/target-driven models, addressing health literacy and supportive infrastructures, optimizing resources and policies. Notably, as patient needs, treatments, and technologies evolve, the strategies employed to ensure equitable care must also evolve. PPIE implementations support this central argument in both models. Regardless of whether the approach was more bottom-up 44 or top-down/data oriented, 46 PPIE informs health equity by promoting the dynamism and appropriateness of interventions and by revealing actionable barriers.
Key features of community-driven models include the collaboration among academic, healthcare, and community organizations, 39 cost-effective and culturally tailored interventions, 40 and a focus on the social determinants of health. 36 These models emphasize bottom-up participation and co-design to build equity. Data-driven methodologies use population health data and stakeholder collaboration to identify specific gaps in care4,46 and to create targeted solutions. 49 These approaches can be integrated with the expertise of healthcare professionals to find adaptable solutions.42,48 Furthermore, equity targets for breast cancer care will facilitate future improvements by informing specific strategies that overcome barriers such as transportation and a lack of culturally inclusive education.
Nevertheless, it has been demonstrated that PPIE applications face several challenges. These include the difficulty of developing an effective application and the lack of guidance on how to engage with a diverse range of patients and members of the public effectively. 50 This results in suboptimal evidence of impact and exposes PPIE to accusations of tokenism.33,50 To move beyond superficial engagement, the power dynamics must be addressed. In this context, precise models or frameworks help to ensure this balance. 45 Moreover, building consistent relationships demands time and commitment from all stakeholders. Understanding the unique needs of diverse groups is essential and requires a culturally sensitive approach. 51 Building trust, fostering community partnerships and networks can further reduce the distance from marginalized groups. 51 In fact, PPIE must also be sustainable. This requires adequate resources to support continuous engagement. Significant sustainability challenges include staff shortages, high turnover within research teams, and the perception of PPIE as an additional workload. 32 A recent review outlined several research gaps: the weakness of study design hinders the reproducibility of research, as well as the lack of cost-effectiveness studies. 52 It is advisable to state intentions and methods regarding PPIE transparently, as was done in the European project cited before. 47
Lastly, it is crucial to translate insights from PPIE into actionable changes. Flexibility in PPIE applications is essential. However, to overcome the presented barriers, it is possible to frame PPIE into research protocols and organizational models, enhancing equity 50 and accountability. For example, hybrid participation models could be vital for achieving a genuine, sustainable, and accessible PPIE, as well as context- and health-specific approaches. 32
Implications for Practice and Recommendations
PPIE is a critical driver for achieving health equity in breast cancer care: it should be regarded as a tool for improving the delivery of oncological care and its outcomes. Both community-driven and data-driven models offer complementary frameworks for creating adaptable systems that respond to the multifaceted needs of diverse populations. Community-led initiatives have been shown to ensure that interventions are culturally relevant and address fundamental social determinants of health. Conversely, data-driven approaches provide the systematic evidence required to target resources effectively and to measure progress. Based on the findings, we recommend the following: • Advance research in PPIE: future studies should employ transparency and methodological rigor in describing PPIE’s role.
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Further research correlating specific PPIE interventions with measurable health equity outcomes would enhance our understanding of the topic: in order to attribute change to specific PPIE inputs, a set of core equity outcomes would be useful, such as stage at diagnosis by ethnicity and survivorship Patient Reported Outcomes by disability status. Moreover, PPIE reporting with GRIPP2 is warranted,
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including mixed methods and narrative approaches
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; • Strengthen health policy: policymakers should establish ethical and equitable care plans that formally support and integrate PPIE into healthcare planning and delivery; • Foster connections: build meaningful partnerships
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between healthcare institutions, community services, and patient associations to provide personalized and appropriate care. Co-construction approaches were particularly promising.44,47 • Promote knowledge sharing: facilitate international exchange of local experiences, project designs, and successful models to enhance scientific knowledge and connect diverse socio-sanitary contexts to accelerate progress.
Conclusion
Shedding light on how PPIE can inform equity issues in the breast cancer field may provide ideas and replicable methods for equity evaluation that can be adapted in each local context. Integrating PPIE into flexible organizational and research models may enhance its effectiveness and reach. However, few studies addressing this topic were found, especially those focusing on breast cancer survivorship care. Advancing PPIE reporting in rigorous study designs is the first step to ensuring effective and reproducible implementation. Furthermore, the models’ adaptive features may reduce health inequities, increasing their reach, and strengthening community collaborations. Innovative care models that prioritize community characteristics and specific needs can pave the way for equal and sustainable care.
Footnotes
Acknowledgments
This study was partially supported by Italian Ministry of Health – Ricerca Corrente Annual Program 2026.
Author Contributions
DM: Conceptualization and writing of the original manuscript draft; SC: Conceptualization, review and editing of the manuscript.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
Declaration of Conflicting Interest
The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.