Mark Thomaz Ugliara Barone

While meaningful engagement of people living with health conditions is increasingly recognized as essential for the design of equitable and effective healthcare, research, and policy, tokenism persists across the global landscape. Despite the development and dissemination of frameworks and resolutions advocating for engagement, lived-experience contributors, as the authors of this article, still report feeling relegated to the margins of milestone meetings, signaling performative inclusion rather than genuine shared leadership. Instances of denied compensation, inferior housing accommodations, and unequal treatment further underscore a profound lack of respect and undermine any pretense of partnership. The foundational “nothing about us without us” remains absent from key global health resolutions and only deepens these concerns. This article contends that true meaningful engagement demands the embedding of nonnegotiable principles, including: substantive integration of lived experience throughout decision-making, equitable reimbursement, and resource parity. To move beyond mere symbolic gestures toward authentic partnership is not just ethical, it is essential for building trust and achieving truly people-centered systems.

In Brazil and many other low- and middle-income countries, noncommunicable conditions (NCCs) or noncommunicable diseases such as diabetes mellitus, chronic kidney disease, and dyslipidemia pose significant health and economic challenges. Motivated by our personal experiences living and/or working with NCCs (including one author with diabetes and another with familial hypercholesterolemia), and our collective roles as advocates, researchers, and healthcare professionals, this article highlights the importance of early management strategies and the potential of point-of-care devices in primary healthcare to improve diagnosis and treatment outcomes.

Meaningful engagement of people living with health conditions means actively incorporating them in all stages of health decision-making. Despite efforts by global health agencies and governments towards meaningful engagement of people living with noncommunicable diseases (PLWNCDs), many opportunities for participation are tokenistic. PLWNCDs often report feeling excluded from technical discussions and outnumbered by other stakeholders. Participation in decision-making is a human right, and PLWNCDs must continue advocating for a “nothing about us without us” approach. They should be respected as decision-makers with voice, agency, voting power, rights, and duties. This article highlights four key themes: (1) both tokenistic participation and exclusion of PLWNCDs from technical discussions are still common; (2) the “patient” label implies passivity and can perpetuate limited participation, whereas the identifier of PLWNCDs connotes valuable knowledge associated with lived experience; (3) meaningful participation of PLWNCDs in health decision-making processes should be considered a human right; (4) PLWNCD should be empowered to continue to advocate for inclusion and be respected as decision-makers.

Background: Brazil HealthRise community-based program focused on improving technologies for care coordination, developing the local workforce, and identifying and educating individuals with hypertension and diabetes. Objectives: To assess the impact of HealthRise on hypertension and diabetes management among patients in the region of Teófilo Otoni (TO) and in the city of Vitória da Conquista (VC). Methods: Grantees routinely collected patient-level clinical in intervention areas from March 2017 to December 2018; endline qualitative interviews were conducted with patients, providers, administrators, and policymakers in both intervention and comparison sites. Paired t-tests were employed to measure the potential impact of the program on reducing systolic blood pressure (SBP) and hemoglobin A1c (HbA1c) between baseline and endline, and on increasing the percentage of enrollees meeting clinical targets (SBP < 140 mmHg for hypertension; < 8% HbA1c for diabetes). We analyzed qualitative data using thematic coding. Results: Across sites, 2,764 hypertension patients and 244 diabetes patients were followed through endline. Participants experienced reductions in SBP in TO (−1.9 mmHg [−3.1;−0.7]) and VC (−4,2 mmHg [−5.2;−3.1]); more hypertension patients met treatment targets in these locations (TO: +3.9 percentage-points [0.4;7.2]; VC: +10.5 percentage-points [7.81;13.2]) by endline. HbA1c decreased in TO (−0.6 [−0.9;−0.4]) and VC (−0.9 [−1.4;−0.5]), and more individuals presented HbA1c < 8% by endline (TO: +10.2 percentage-points [3.8, 16.6]; VC: +25 percentage-points [12.2, 37.8]). Qualitative data pointed to overall enthusiasm for new technologies and care routine implemented by HealthRise, but challenges regarding program implementation, integration with other levels of care, and social determinants of health persisted. Conclusions: Program showed positive effects on hypertension and diabetes outcomes. Community-based health interventions can help bridge healthcare gaps, but their full impact will remain limited until multisectoral policies and actions address underlying structural and social determinants of health more effectively.

ADJ Diabetes Brasil, a Brazilian not-for-profit organization founded in 1980, has been offering since 2009 leadership training programs for youth. During the first 10 years, the programs were exclusively offered to individuals between 15 and 25 years old living with or interested in diabetes. Since 2020, the organization has broadened its programs to youth from 13 to 25 years old, including interest in other health areas, gender equity, domestic violence, education and environment. Furthermore, Brazil is the fifth country in number of people with diabetes (16.8 million adults) and the lack of information and adequate care for its management lead to complications such as neuropathy and coronary artery disease. In addition to health challenges, the country faces social problems such as femicide. The program consists of an intensive program made up of practical workshops during 6 months. It aims to develop skills such as fundraising, empathy, resilience, health education, human rights and advocacy, leadership, effective communication, storytelling, persuasion and interpersonal relationships.The activities rely on the collaboration of expert facilitators from different sectors. However, the COVID-19 pandemic obliged us to adapt most of the program to online platforms. Therefore, this created a new challenge of engaging the youth through one additional online activity.The impact and benefits identified in the program resulted in the preparation of young leaders that became some of the most active health and social advocates and entrepreneurs in national and international platforms. The purpose of the program is to train young leaders, so that they become fully aware of the reality of their surroundings and empowered to use their voice to generate consistent changes in their lives, communities and society. These changes are expected to positively impact the public health, organization of the society and everyone’s wellbeing, especially for the most vulnerable individuals.

Background: Acceptance and adjustment to lifelong noncommunicable diseases (NCDs) pose a great challenge for individuals living with these conditions. Diabetes is one of the most prevalent NCDs, with type 1 diabetes usually diagnosed during childhood. Self-leadership is linked to internal and external factors that may motivate individuals with NCDs to play an active role as changemakers in their community or society. The Young Leaders in Diabetes (YLD) training, created to equip young people with skills that would benefit the population to which they belong, uses the Empowerment Ladder as a framework to identify their position relative to three leadership stages (self, community and society). Objective: To describe the stages and the ‘climbing’ process of the Empowerment Ladder and assess its suitability as a framework for use in a leadership training context. Method: From among 29 youth leaders who participated, 15 were selected (5 men and 10 women) and had their community engagement and activity analysed before and after training. Individuals were positioned on the Empowerment Ladder according to their past and current roles and activities. The difference between pre- and post-training test grades (delta scores) was calculated. Results: Post-training scores were significantly higher than pre-training scores (8.9 ± 0.54 vs 7.6 ± 1.08, p = .00084). Most individuals moved to a higher step on the Empowerment Ladder; however, three individuals, with delta scores lower than the median (0.1, 0.15 and 0.85) remained at their pre-YLD training level. Only one individual moved from Stage 1 (self) to Stage 3 (society). Another individual occupied two different steps at Stages 1 and 2 simultaneously because, although they demonstrated community leadership, they had not yet accepted their own health condition. Conclusion: The Empowerment Ladder proved a useful tool for identifying stages from self to broader levels of leadership in individuals living with type 1 diabetes. These initial findings need to be validated with a larger population, which includes other NCD groups.