In the UK, there has been a notable expansion of PPI in scientific research, particularly in the authorship of academic publications.25 Individuals with lived experience—such as patients, caregivers, and service users—are increasingly recognized as essential contributors to the production of scientific knowledge.26 These contributors actively participate as co-authors in peer-reviewed articles, book chapters, and editorials and frequently serve as speakers at national and international conferences. However, involving patients as authors requires careful consideration to ensure meaningful involvement and equitable contributions. A systematic review published in 2020 provided 21 recommendations to maximize the benefits and minimize the risks of involving patients as authors in peer-reviewed publications.27 This shift represents a critical step towards democratization of knowledge, ensuring that research reflects the priorities and realities of those that it seeks to benefit. Integrating non-academic perspectives strengthens the relevance and applicability of findings, reinforcing the ethical imperative of participatory science.28

In Canada, since 2011, when the CIHR launched the Strategy for Patient-Oriented Research (SPOR), there has been a significant increase in the need to implement this approach.14 One strategy to facilitate implementation, as mentioned earlier, is through training. An example of a training program in Canada is the Family Engagement in Research (FER) Course.29 This course grew out of a partnership between CanChild Center for Childhood-Onset Disability Research, Kids Brain Health Network, and McMaster University Continuing Education in 2018. The FER Course is a 10-week (30-hour) training course for researchers and family partners in the field of neurodevelopmental disability and child health.17,29 The purpose of the FER Course is to create a community of researchers and family members who learn together about both the theory and practice of family engagement in research. As of March 2025, there are 713 graduates from 23 countries across 28 cohorts.29

Recent studies have considered specific geographic areas to describe the status of PPI activity in the world (e.g. Norway, Ireland, and Canada).6,30,31 Aas et al. (2023),30 identified the current challenges and barriers to PPI in health research in Norway by conducting a survey study with researchers and patient organizations. Gilfoyl et al. (2022),31 in a perspective article, described the context of PPI in Ireland and presented the need to combine methodological imperatives with political imperatives to support and encourage the normalization of meaningful involvement. Manafo et al. (2018),6 published a scoping review to identify methods for and outcomes of PPI in health research in Canada.

In the UK, there are several PPI training programs to equip researchers and healthcare professionals with the skills for effective patient, carer, and public engagement in research. These programs emphasize co-production, ethical considerations, and best practices for inclusive participation.2 Institutions such as the NIHR and several academic centres offer structured workshops, online courses, and practical learning experiences to enhance researchers’ ability to integrate PPI effectively.32 Evidence suggests that effective PPI training fosters reciprocal relationships, ensuring that public contributors play an active role in defining research priorities, study designs, and dissemination strategies, ultimately improving the relevance and impact of health research.33

Yu et al. (2021)34 evaluated a PPI training program at a large biomedical research center in the UK, highlighting its positive impact on researchers’ confidence and ability to engage patients and the public in research. The program emphasized interactive learning, real-world case studies, and facilitated discussions with experienced PPI contributors. The study also highlighted the importance of institutional commitment to sustained PPI training, noting that researchers benefited from ongoing mentoring and practical resources to implement PPI effectively. However, challenges remained in ensuring that PPI training was accessible and tailored to researchers with varying levels of experience and across different disciplines.34 These findings reinforce the need for adaptable learning approaches and ongoing support mechanisms to sustain meaningful engagement in research initiatives in different contexts.

As researchers become more proficient in integrating PPI into their studies, public contributors are gaining recognition as participants in research design and implementation and as key voices in scholarly publishing. This shift is evident in the growing institutionalization of public involvement within high-impact scientific journals, where lay expertise is increasingly valued in manuscript review, editorial policies, and knowledge dissemination. A significant milestone in this movement has been the institutionalized inclusion of public contributors in the British Medical Journal (BMJ), which began using PPI as a Strategy in 2014.35 The BMJ implemented the strategy for patient and public partnership, embedding their insights into manuscript reviews, editorial policies, and article development.36 Importantly, the BMJ recently adopted a financial compensation for patients and public members involved in the peer review process, recognizing their contributions as valuable and essential to ensuring a more inclusive and representative scientific discourse.37 This approach aligns with broader policies promoted by the NIHR, which explicitly recommends fair payment and reimbursement for public contributors involved in research, acknowledging their time, expertise, and lived experience as legitimate and valued forms of contribution. This model underscores a growing recognition of the value of lay expertise in shaping health research and the need to reimburse time and expenses incurred. In parallel, specialized journals such as Biomed Central’s Research Involvement and Engagement have emerged,38 dedicated entirely to fostering a collaborative publishing model. These journals appoint both researchers and public contributors as co-editors, actively promoting manuscripts in which patients and service users co-design, conduct, and disseminate studies.

The growing literature in the field addresses the steps, implementation, challenges, and expectations of the use of PPI in research around the world. To date, most of the studies have originated in anglophone, in HICs. In 2019, Cook et al.10 published a systematic review summarizing PPI strategy and its impact on health research in LMICs. While a total of 61 studies were identified, the review concluded that PPI in research, conducted in LMICs, was sparse in its description and impact.10 No study was identified as originating from Brazil. Despite the relevant results of this review,10 the database searches were current to December 2017, and articles published in Portuguese (Brazil's primary language) were not included. In addition, in 2017, a revised checklist to report the inclusion of PPI - Guidance for Reporting Involvement of Patients and the Public-2 (GRIPP2)12 was developed, and it was not considered by Cook et al.10 Considering the increased incentive to include PPI in research and the need to understand the description and impact of PPI inclusion in research conducted in LMICs, it is relevant to understand and improve the current context of PPI inclusion in Brazilian research.

PPI is not a new concept in Brazil, where the Brazilian public health system (Sistema Único de Saúde, SUS) is driven by civil society and public health professionals.39 Community participation in health-related decision-making has been enshrined in the Brazilian constitution since the SUS was first established in 1988. It has been regulated through National Health Conferences and Health Councils.40-44 Therefore, in essence, health care in Brazil was founded on the principle that underpins PPI, “nothing about me without me”, and widespread social participation in Brazilian health care has been observed in the last 30 years.39,43

PPI in legislation, regulation, and policy changes in SUS are well recognized. A recent scoping review mapping PPI methods used in macro-level health policy decision-making worldwide,44 identified two studies conducted in Brazil.45,46 For these studies, the PPI method was classified as “Citizen Advisory Committees or Citizen Health Councils”, where citizens or different stakeholders are involved in discussions on the issues.44-46 The Brazilian government established these councils at municipal, state, and national levels, where “citizens, health professionals, and government officials discuss health policies and resource allocation, serving as an advisory committee”.44-46 Lopes et al.,43 characterized the PPI inclusion in the institutions responsible for managing health technologies at the federal level in Brazil, noting progress in decision-making spaces. However, they highlighted the necessity for additional studies focusing on participant characterization within this area.43 Despite these important studies about PPI in Brazilian Health Councils, PPI inclusion in Brazilian research has not kept pace.43-46

PPI remains a relatively new concept in Brazil in the research context, particularly when defined as the active involvement of the target population across multiple stages of the research cycle, including priority setting, study design, data collection, analysis, and knowledge translation. To date, studies that characterized the context of the inclusion of PPI in research conducted in Brazil have not been identified. What has been seen is that most studies with PPI have been developed in HICs,10,44,47-49 indicating the need for more studies related to this topic carried out in LMICs.50

Initiatives to implement Patient and Public Involvement (PPI) in research in Brazil focus on bridging the gap between researchers and the public through accessible resources. One such effort includes the development of e-books written in plain language to familiarize researchers and community members with the concept of PPI and to describe “how to do PPI in research” based on successful experiences from countries where this practice is already well established.51,52 In addition, the translation of key implementation tools, such as the Involvement Matrix, has made practical guidance more accessible, facilitating the adoption of PPI in the Brazilian research context.53 These efforts have led to the first research project designed in collaboration with the target population, the Better Together study, which adopted a co-design approach involving adolescents with cerebral palsy, their families, physical therapists, and occupational therapists to develop an intervention aimed at increasing participation in leisure activities.54

Brazil has a set of specific characteristics that warrant attention concerning PPI in research. Firstly, Brazil has an existing strong citizen focus, with shared decision-making, well recognized in health-related processes and decisions in its public health system (SUS), and where universality, integrality, and social participation principles are considered a duty of the state.39 Brazil is also a large country (covering almost 47% of South America), the seventh most populous in the world, and one of the most multicultural and diverse ethnically nations.39 It is the only country in the Americas where Brazilian Portuguese is the official language.55 Therefore, local research is often published in Brazilian Portuguese but is not commonly included in reviews. The SUS is considered the biggest public health system in the world, where technological and scientific advances are recognized as integral to its sustainability.39,56 Considering the positive benefits provided by PPI in research, the close relationship between PPI in research and principles of health in Brazil, and the different factors that could influence PPI in research, such as economic, cultural, environmental, and other structural factors, it is crucial to develop and translate the knowledge of PPI in Brazilian research.

One of the first essential steps to advancing Patient and Public Involvement (PPI) in Brazil is knowledge translation for researchers, professionals, public associations, clinicians, students, and families as potential partners. It is also important to promote literacy in clinical research. Many patients and members of the public have no idea how clinical research works, what types exist, and so on. This can be achieved through various approaches, such as formal education in universities and colleges, specialized PPI training tailored to the Brazilian context, engagement via social media, participation in conferences, and community outreach events.

Another key step in expanding PPI opportunities is ensuring that including the participation of patients and the public as active members of research teams should be a mandatory component of funding agency calls. This approach would allow PPI participants to contribute meaningfully from the outset of the research process while receiving appropriate recognition and compensation—whether through scholarships or reimbursements for their time and dedication. Additionally, fostering closer collaboration with Brazil’s National Research Ethics Commission (Comissão Nacional de Ética em Pesquisa – CONEP) could enhance understanding of ethical and procedural aspects, paving the way for patients and other public contributors to take part not only in research development but also in the review of research projects, strengthening transparency and societal engagement in scientific endeavors. In CONEP, Brazil already includes public participants as members of the committee, but it still has to expand to all states and local committees.57

Furthermore, making patient and public involvement mandatory at all stages of research, starting from the study's planning phase, would encourage research teams to establish a structured database of partners, consumers, and stakeholders interested in collaborating on research projects in Brazil. This would foster a culture of inclusion and engagement, ultimately strengthening the impact and relevance of scientific research. The implementation of specific training for Brazilian researchers, professionals, and patient/public members is a strategy recently developed by our group, as: the offer of the translation of the Family Engagement Course to Brazilian Portuguese;29 and the I School of PPI in Brazil held at the Federal University of Paraíba (UFPB), both in the fall of 2025, which trained over 60 member of the public and researchers at different stages of their academic and professional development.