¡Únete para hacer realidad la participación significativa de las personas que viven con enfermedades no transmisibles! Esta página describe los principios fundamentales y las estrategias centrales de la Carta Mundial, y proporciona una guía para adherir a ella y hacerla operativa. ¡Gracias por el interés de tu organización en adherir a la Carta Mundial!
Here’s what you can expect from the Global Charter endorsement journey.
Step 1 Endorsing the Global Charter
Committing to its principles and core strategies
The Global Charter on Meaningful Involvement of People Living with NCDs provides a shared understanding of meaningful involvement, it’s fundamental principles, and core strategies to operationalise it within organisational practices.
It’s aimed at civil society, governments, international partners such as multilateral and bilateral agencies, international NGOs, foundations, and philanthropies, appropriate private sector organisations, the research community and academia.
It rallies these stakeholders to accelerate efforts to meaningfully involve people living with noncommunicable diseases (NCDs) in decision-making in the policies, programmes and services that affect them. By endorsing the Global Charter, your organisation or institution commits to meaningfully involve people living with NCDs, realising the fundamental principles and applying the core and broadly applicable strategies.
Following the endorsement, your organisation’s name and logo will be published on the Wall of Endorsers.
Sample video
Fundamental principles for meaningful involvement
Al adherir a la Carta Global, tu organización se compromete a cumplir los siguientes principios como base para una participación significativa:
Basarse en derechos
Las personas que viven con ENT son plenamente conscientes de sus derechos (incluidos los derechos a la salud y a la participación) y los exigen para poder alcanzar su máximo potencial como miembros comprometidos de la sociedad, libres de estigma y discriminación, y como garantes de deberes son conscientes de su obligación de respetar, proteger, defender y cumplir estos derechos.
Respeto y dignidad
Las personas que viven con ENT son tratadas con respeto y dignidad, se respeta su privacidad y se las trata como iguales y se les brinda apoyo para que sean autónomas y participen de manera significativa en todos los procesos de toma de decisiones que les conciernen.
Las personas en el centro
Las personas que viven con ENT y su bienestar, en lugar de sus condiciones, se colocan en el centro de las políticas, programas y servicios, y sus necesidades y prioridades dan forma a la respuesta a las ENT y la arraigan en la comunidad.
Equidad
Garantizar que los grupos marginados y subrepresentados se consideren centrales en los procesos para lograr resultados en salud y desarrollo equitativos y justos, reconociendo que estos grupos suelen tener el mayor riesgo de contraer ENT.
Participación social
Disponer de mecanismos formales para que las personas que viven con ENT y las comunidades tengan un “lugar en la mesa” y puedan informar e influir en las políticas y en la toma de decisiones en pie de igualdad y hacer que las instituciones rindan cuentas.
"Meaningful involvement is about long-term partnerships and not about short-term assignments."
Global Charter consultation participant
Estrategias fundamentales para poner en práctica una participación significativa
Las organizaciones firmantes de esta Carta Mundial nos comprometemos a seguir e implementar las siguientes estrategias para operacionalizar la participación significativa y lograr una respuesta a las ENT centrada en las personas:
Demostrar liderazgo y compromiso de alto nivel con la participación significativa en el marco de una cultura organizacional que reconoce el valor de las experiencias de vida y del compromiso comunitario. Integrar formalmente la participación significativa en las políticas y procesos de la organización, con los recursos y las capacidades internas necesarias para mantenerla en el tiempo.
Identificar, crear y formalizar oportunidades para la participación significativa de las personas que viven con ENT en funciones de gobernanza y toma de decisiones y en las políticas, los programas, los servicios y en todos los aspectos de la respuesta a las ENT que les afectan.
Garantizar que la participación significativa se adecúe al contexto y que abarque las etapas de diseño y planificación, así como la implementación, el seguimiento y la evaluación.
Crear entornos propicios para la participación sostenida, en particular la de los grupos marginados, contrarrestando las barreras y abordando los desequilibrios, las desigualdades e inequidades de poder. Compartir conocimientos con las personas que viven con ENT de forma culturalmente apropiada y accesible, utilizando los idiomas locales, asociándose con los servicios locales y habilitando espacios en los que las personas que viven con ENT se sientan seguras de participar, compartiendo sus puntos de vista sin ser juzgadas, estigmatizadas ni discriminadas.
Definir claramente y acordar por adelantado el propósito de la participación, los roles, las responsabilidades y las expectativas para generar confianza, compromiso y rendición de cuentas mutua. Dar retroalimentación sobre los resultados de la participación e involucrar a las personas que viven con ENT en la evaluación regular de tales esfuerzos.
Desarrollar estrategias de selección transparentes que aseguren la legitimidad representativa de las personas que viven con ENT y busquen involucrar a una amplia gama de distritos/ temas/ experiencias/ conocimientos/ antecedentes.
Fortalecer las capacidades de las personas que viven con ENT mediante la formación, la información, contexto, recursos, tecnología, etc. adecuados para garantizar su participación exitosa.
Brindar apoyo (logístico y financiero, según sea factible) a las personas que viven con ENT de manera equitativa para garantizar que su participación sea reconocida, valorada y accesible, sin dejar a nadie atrás.
Utilizar un lenguaje inclusivo y centrado en la persona que respete la dignidad y las preferencias de las personas a las que se hace referencia.
Asegurar una participación comunitaria sostenida apoyando a las organizaciones de la sociedad civil, conectando a las personas que viven con ENT con las comunidades que representan y multiplicando el impacto de la participación.
Cuando los compromisos asumidos en esta Carta Mundial se concreten se habrá logrado una visión colectiva de salud para todas las personas, sin dejar a nadie atrás. Les invitamos a unirse y a hacer que esto suceda.
Step 2 Take Action
How can my organisation operationalise meaningful involvement?
The Global Charter is accompanied by a non-exhaustive menu of enabling actions that different stakeholders can take forward to help achieve meaningful involvement. These enabling actions have been identified through the consultation process leading up to the Global Charter. They build upon the principles and core strategies highlighted in the Global Charter to operationalise meaningful involvement of people living with NCDs.
Upholding and defending the universal right to health and right to participation and enabling people living with noncommunicable diseases (NCDs) NCDs to claim their rights by providing civic space and ensuring an enabling policy and legal environment.
Ensuring formal and sustained governance mechanisms, embedded in legal frameworks, that enable the involvement of civil society and include people living with NCDs and communities in participatory decision-making processes and bodies, including public consultations, deliberative processes, commissions, technical working groups and national NCD coordination mechanisms.
Involving civil society and including people living with NCDs and marginalised/ underrepresented communities in the design, implementation, monitoring and evaluation of NCD and relevant health and development policies, plans (including the National NCD Plan), services, programmes, and public awareness campaigns, from their inception.
Providing effective health systems governance and accountability structures as part of Universal Health Coverage (UHC) that engages communities and provides integrated health services that respond to the health needs and preferences of people living with NCDs throughout their life course.
Involving civil society and including people living with NCDs on national delegations to policy/decision-making meetings; e.g., World Health Assembly, UN General Assembly, WHO Regional Committee Meetings, etc.
Raising awareness of participatory decision-making processes and bodies, particularly at sub-national and community levels, to promote citizenship, public accountability, and encourage involvement of civil society and people living with NCDs in policy planning, implementation, monitoring and evaluation.
Promoting meaningful involvement of people living with NCDs as part of communities and civil society and at the core of a whole-of-society approach to NCDs, encouraging and supporting stakeholders in its implementation.
Providing the educational resources and support needed by people living with NCDs to improve their health literacy and make informed decisions about their own health, for both prevention and management of NCDs.
Supporting and providing sustainable financing for a strong civil society to underpin efforts meaningfully involving people living with NCDs, reaching marginalised and underrepresented communities.
Fostering institution-wide cultural shifts and building staff capacity on meaningful involvement of people living with noncommunicable diseases (NCDs), as part of communities and civil society, ensuring leadership and commitment at the highest level, with clear policies to enable involvement globally, regionally, and nationally.
Supporting Member States in implementing meaningful involvement of people living with NCDs, as part of communities and civil society, to strengthen NCD prevention and treatment, Universal Health Coverage, and broader sustainable development.
Raising awareness of and documenting existing mechanisms, good practice of meaningful involvement of people living with NCDs and promoting information exchanges across countries.
Formally involving and supporting people living with NCDs in decision-making processes and bodies (e.g. formal consultation processes, technical working groups, governing bodies, advisory groups, expert commissions) relating to NCDs and other relevant global health and sustainable development issues.
Ensuring meaningful involvement of people living with NCDs in programme planning, implementation and monitoring and evaluation to ensure interventions are responsive to needs of communities.
Supporting and providing sustainable financing for a strong civil society to underpin efforts to meaningfully involve people living with NCDs, reaching vulnerable and marginalised communities.
Consulting with civil society organisations and various lived experience communities to highlight diverse voices in governance and programme delivery mechanisms and inform policy processes at global, regional, and national levels.
Organising/coordinating with other civil society organisations across noncommunicable diseases (NCDs) , Universal Health Coverage and Sustainable Development Goals, and networks of people living with NCDs, and advocating for inclusion in decision-making processes and bodies.
Joining forces with social movements representing people often left behind, including youth and child rights groups, disability groups, older people’s rights groups, women’s health groups, Indigenous communities, HIV/AIDS groups, LGBTQ+ communities, humanitarian groups, mental health groups, environment and equity advocates, and others to advocate for systemic social reform.
Ensuring meaningful involvement of people living with NCDs and communities is occurring within the organisation and internal staff capacities are built to embed meaningful involvement in the organisation’s governance, strategy, advocacy, research, and programmatic work.
Placing NCDs on the public agenda, including by using traditional media and social media, amplifying voices of people living with NCDs and of marginalised and underrepresented communities, breaking down stigma and discrimination, and addressing myths and misconceptions.
Raising awareness of meaningful involvement opportunities, its importance, and its benefits among people living with NCDs, leveraging, and strengthening existing community engagement efforts, ensuring that results of involvement are shared with the broader community.
Strengthening the capacity of people living with NCDs based on identified needs (e.g. public speaking and communication skills, advocacy, programme planning, monitoring and evaluation, etc.) to ensure involvement at the global, regional, national and local levels.
Ensuring voices of marginalised and under-represented communities are amplified in NCDs discussions and individuals are supported to be involved.
Supporting capacity development of other civil society organisations in NCD prevention and control as well as implementing and advocating for meaningful involvement.
Advocating and supporting different stakeholders in driving a shift in culture towards meaningful involvement by articulating its value and advocating for roles for people living with NCDs in decision-making processes.
Advocating for social justice and the upholding of human rights, such as addressing barriers to care, stigma, and discrimination. Explore binding legal instruments and treaties and using legal measures to address human rights violations.
Involving people living with noncommunicable diseases (NCDs) as active participants in the design, conduct and dissemination of research to enhance its quality and ensure that the needs of people living with NCDs are prioritised.
Strengthening community-based and community-led, participatory research to improve NCD services based on perspectives of those with lived experiences.
Enhancing research capacity in meaningful involvement and documenting best practices.
Ensuring involvement of people living with NCDs in research-related decision-making processes, including ethics, clinical, and safety audit boards/committees.
Working in partnership with civil society, multilaterals, and governments on whole of society actions, and promoting meaningful involvement of people living with noncommunicable diseases (NCDs) and communities in associated governance, decision-making, planning, implementation, monitoring and evaluation.
Becoming a driving force for the meaningful involvement of people living with NCDs and communities by including their involvement in Environmental, Social and Corporate governance, sharing organisational experiences and the results and benefits of the involvement.
Implementing health systems strengthening initiatives and access programmes that address the needs of people living with NCDs, with the adoption and tracking of adequate people-centred indicators.
Ensuring involvement of people living with NCDs in research, design, and delivery of social business models on health programming for NCDs and Sustainable Development Goals (SDGs) more broadly.
Supporting civil society and enabling staff, including those living with NCDs, to volunteer and contribute to community-based health promoting programmes and activities (e.g., NCD prevention awareness raising, early detection campaigns) and ensuring local healthy environments (e.g., smoke-free spaces, sports facilities, parks, walkways, potable water etc).
Ensuring the ethical involvement of people living with NCDs in NCD strategy, research, programme, product, and service design, monitoring and evaluation (e.g., advisory groups) and in employee representative bodies.
Supporting efforts to tackle NCD-related stigma and discrimination to foster an inclusive and adaptive workplace that enables people to manage their NCD conditions.
Creating procedures for implementing meaningful involvement of people living with NCDs at all levels of the workplace including their recruitment as well as identifying existing workplace policies that improve or hinder their meaningful involvement.
Mainstreaming NCD prevention and control within the organisation by developing and implementing specific health promoting and preventive workplace policies (e.g., workplace wellness programmes including mental health support).
Step 3 Tracking progress
Sharing lessons learnt
Your organisation’s commitment to the Global Charter and meaningful involvement of people living with NCDs can have a long lasting impact on efforts to achieve health for all. To ensure we are collectively upholding our commitments to its principles and core strategies, all endorsing organisations will be involved in periodic reporting to share progress and lessons learnt on actions taken.
A biennial survey will be conducted with endorsing organisations to gather insights on progress and a report based on pooled results from the survey will be made available publicly. To grow the knowledge base on meaningful involvement of people living with NCDs, there will be ongoing promotion of good practice examples, key enablers, and experience sharing. NCD Alliance will be in regular contact with endorsing organisations.
