More and more, there is recognition among governments, organisations and institutions that people living with NCDs need to be involved in decisions that will affect their health. This has certainly been true in Kenya, where people living with NCDs just played an important part in developing the country’s National Strategic Plan for Prevention and Control of NCDs 2020/21-2025/26 (NSP), launched 27 July 2021.

Kenya’s NSP is based on the need to strengthen the comprehensive multi-sectoral response to the NCD burden, which is growing at a shocking speed in Kenya, throughout Africa, and in most parts of the world. This is due to factors like unhealthy diets and air pollution, which until the past few decades have not been so rampant and therefore have not had such a deadly effect on people.

It was clear that the causes of many NCDs extend beyond the health sector, so when the NSP was being developed, it involved a highly participatory process with diverse stakeholders, like county governments, civil society, development partners, and of course people living with NCDs. How could they have created a national strategy for NCDs without consulting people who are living with NCDs, and are using national health services to manage them? It seems impossible, but in many cases, that is exactly what happens.

Lessons learnt from Kenya’s success

The Non-communicable Diseases Alliance Kenya (NCDAK) was proud to play a key role in developing the NSP. Various members, including two representatives of our Caucus of People Living with NCDs, were involved in the Ministry of Health’s technical working group that developed the Strategy. The whole process provided a clearly defined opportunity for people living with NCDs to be a meaningful part of this critical decision-making. That is a big part of the reason why it was so successful.

It is not enough to just recognise that people living with NCDs are experts in their diseases and in dealing with healthcare systems. It’s an important one, but that is only the first step. After that, you need to create a place at the table for them, and to make sure that nothing on the menu is strange to them; they must be involved from the preparation stage. Meaningful engagement must include involvement ab initio.

The interaction between people living with NCDs and health providers and policy makers outside of the clinic environment creates a crucial opportunity for honest unrestrained exchange and feedback that is crucial to the success of the entire NSP.

NCDAK has taken a leading role in promoting advocacy and preparing people living with NCDs as advocates to be meaningfully involved; from equipping them with skills to share lived experiences publicly and call for action to being an integral link between them and the Ministry of Health and other relevant players in the NCD arena.

The Global Charter: A roadmap for meaningful involvement

To help guarantee that this kind of collaboration continues, people living with NCDs must become key partners in strengthening NCD advocacy, communication and social mobilisation at national, county and community levels. One tool has just become available to guide these efforts: the Global Charter on Meaningful Involvement of People Living with NCDs.

Developed by the NCD Alliance through a consultative process similar to that used for the Kenya NSP, the Global Charter outlines fundamental principles and 10 core strategies to ensure the meaningful involvement of people living with NCDs at all stages – from design and planning, through to implementation, monitoring and evaluation of NCD initiatives. It is now open for endorsements from civil society organisations, governments, international partners and the where and as appropriate private sector. Organisations who endorse the Charter are encouraged to track their progress in embedding meaningful involvement in organisational practices, and sharing key successes and lessons learnt.

In many countries, meaningful involvement of people living with NCDs seems far from becoming reality, but the Global Charter can help bring this reality closer. We need the whole of society to ActonNCDs!

About the author

John Gikonyo is a member of the NCD Alliance of Kenya (NCDAK) and the Team Leader of the NCDAK Caucus of People Livng with NCDs. He is also an advisory group member for the Global Week for Action, and the Founding President of the Renal Patients Society of Kenya. He has been living with a kidney transplant since 2015. A father of two, John is passionate about the meaningful engagement of people living with NCDs in all matters that affect them.