Participants of a community conversation held in Mexico City in August 2017, as part of the global Our Views, Our Voices consultaron with People Living with NCDs, © Analía Lorenzo/NCDA

Global Charter on Meaningful Involvement of People Living with NCDs

People living with NCDs must be active protagonists to the global and national NCD responses in shaping their own health.

In 2021, NCD Alliance will develop by consultation with its network a Global Charter on Meaningful Involvement of People Living with NCDs. It will serve as an advocacy tool to mobilise governments, multilateral agencies, civil society and relevant private sector to put people first.

The Global Charter on Meaningful Involvement of People Living with NCDs seeks to:  

  • Provide a shared understanding of meaningful involvement of people living with NCDs, its importance, key principles and strategies for implementation.  

  • Contribute to a growing knowledge base on meaningful involvement of people living with NCDs increasing understanding of its impact as well as enablers and barriers to its advancement.   

  • Increase commitment to embed meaningful involvement of people living with NCDs in organisational practices, with governments, multilaterals, relevant private sector and civil society organisations called upon to publicly endorse and sign on to the Global Charter.  

  • Provide an accountability process on advancing meaningful involvement of people living with NCDs with periodic reporting required from endorsingorganisations on actions undertaken, challenges faced and lessons learned in implementing the Global Charter.  

The Global Charter is being produced in 2021 through a consultative process with involvement from the broad NCD Alliance network. It will consist of inputs from people living with NCDs, selected government and multilateral representatives, civil society, academia and relevant private sector.  


 

Here’s how we are developing the Global Charter on Meaningful Involvement of People Living with NCD with your support: 

We want to hear from NCD Alliance members and partners!  

An online survey will be available in May 2021 to gather your thoughts on the issue of meaningful involvement of People Living with NCDs and what you would like to see highlighted in the Global Charter

We are holding discussions on meaningful involvement of people living with NCDs in different regions of the world and looking at mobilising across sectors

  • Regional multistakeholder dialogues on the theme of putting people first: For all stakeholders and sectors to express interest in participating

In May – June 2021, NCD Alliance will bring together multiple NCD stakeholders in a series of invitation-only multisectoral regional dialogues (Africa, Latin America, Southeast Asia / Western Pacific and Eastern Mediterranean) to discuss region-specific approaches to people-centred health systems to build back better and fairer from the COVID-19 pandemic and the role of different stakeholders in promoting meaningful involvement of people living with NCDs

The regional multistakeholder dialogues will be held on the following dates for the corresponding regions:

  • Africa - 10 May
  • Latin America - 8 June
  • South-East Asia / Western Pacific - 16 June 
  • Eastern Mediterranean - 22 June

NCD Alliance partners and members can express interest in joining the regional dialogues here.  

  • Our Views, Our Voices regional meetings:  For civil society only (NCDA members)

From May – June 2021, NCD Alliance will also co-host with regional/national NCD alliances a series of Our Views, Our Voices regional meetings in these regions to explore opportunities and barriers related to meaningful involvement of people living with NCDs, alongside strategies and support needed to implement meaningful involvement in organisational practices

The Our Views, Our Voices regional meetings will be held on the following dates for the corresponding regions:

  • Africa - 11 May
  • Latin America - 9 June
  • South-East Asia / Western Pacific - 17 June
  • Eastern Mediterranean - 23 June

NCD Alliance members, including national/regional NCD alliances, can nominate up to four participants to join these civil society only regional meetingsNominations should include individuals with lived experience of NCDs. NCDA members, including national/regional NCD alliances can nominate participants here

We are encouraging national/regional NCD alliances to reach out to their communities!

NCD Alliance is working with national/regional NCD alliances with active grants to reach out their communities and NCD stakeholder networks to gather insights on promoting meaningful involvement of people living with NCDs to inform the building of the Global Charter. Additional grant opportunities for member national/regional NCD alliances will be shared in coming weeks.

We will share a draft of the Global Charter to the NCD Alliance network for public consultation!

In July 2021, and following a range of consultative activities described above, we will share a first draft of the Global Charter with the NCD Alliance network for feedback and comments. 

The Global Charter on Meaningful Involvement of People Living with NCDs will be launched at the 2021 Global Week for Action on NCDs in September 2021.  

NCD Alliance will encourage interested stakeholders to promote widespread endorsement of the Global Charter


What do we mean by meaningful involvement of people living with NCDs?

People living with NCDs must be active protagonists to the global and national NCD responses in shaping their own health. They can ensure that NCD policies, programmes and services are effective and appropriate for the beneficiaries they are meant to be serving. At the community level, involving people living with NCDs promotes health equity, reduces marginalisation and discrimination.

The right to participation is intrinsic to the right to health. However, despite the benefits, the meaningful involvement of people living with NCDs in shaping NCD prevention and control decision-making, policies, programmes and services are not yet common practice. The lived experience remains untapped with rights unrealised.

The meaningful involvement of people living with NCDs is possible when professionals, organisations, or institutions recognise the value of the lived experience. It requires the use of appropriate mechanisms to leverage this value by accessing the knowledge, skills, and insights of people living with NCDs. It avoids tokenism by building a reciprocal relationship with people living with NCDs, ensuring that they also benefit from the experience of getting engaged.  

Over recent years, the NCD community has increasingly mobilised in calling for people living with NCDs’ involvement in decision making processes. For example, the Our Views, Our Voices initiative of the NCD Alliance and people living with NCDs has sought to promote the meaningful involvement of people living with NCDs, supporting and enabling individuals to share their views to take action and drive change.

The Advocacy Agenda of People living with NCDs, produced in 2017, brings together the views of nearly 2000 individuals from across the world, providing advocacy calls to action based on lived experiences1.

Additionally, the meaningful involvement of people living with NCDs and communities has been politically acknowledged in the UN Political Declarations on NCDs and Universal Health Coverage in 2018 and 2019

Meaningful involvement of people living with NCDs is fundamental to creating people-centred approaches to healthcare by recognising their crucial role in shaping health policy and services in ways that address their real needs even beyond the health system.