This was the first WHO consultation focusing on meaningful engagement of PLWNCDs and took place across three days in December 2020.
The meaningful involvement of people living with NCDs (PLWNCDs) in NCD advocacy is crucial in order to strengthen community mobilization to influence improved NCD policy. Now more than ever this involvement is increasingly important with the interplay between the COVID-19 pandemic and the NCD epidemic.
This was the first WHO consultation focusing on meaningful engagement of PLWNCDs and took place across three days in December 2020 and included PLWNCDs, representatives from WHO and UN and civil society partners. The consultation included a mixture of presentations, discussions and breakout sessions.
The objectives of the Informal Consultation were to explore:
Day 1 of the Informal Consultation focused on exploring the value of meaningful engagement, building on lessons learned across other health programmes.
Dr Tedros Adhanom Ghebreyesus (Director General, WHO) gave a welcoming address. Dr Tedros underlined the higher risk to PLWNCDs of COVID 19 and as we work to ‘build back better’ we must engage with civil society to hold WHO and political leaders accountable and to drive change.
The agenda included perspectives of PLWNCDs presented by Dr Summer May Finlay (University of Wollongong) who highlighted the strength and resilience of indigenous people.
Dr Bente Mikkelsen (Director, Department of NCDs, WHO) stressed that despite previous acknowledgements of the role of PLWNCDs in the NCD agenda, in 2020 they have no seat at the table in international financing instruments.
Day 2 focused on identifying activities, workstreams and platforms that offer engagement opportunities for PLWNCDs in the global, regional and national contexts.
Ms Helena Davies (Worldwide Hospice Palliative Care Alliance) shared her thoughts on best practices from her own lived experience and underlined that palliative care is not only about end of life, it is ‘about life’ and without it she would not be participating in the consultation.
Ms Manjusha Chatterjee (NCD Alliance) and Ms Charity Muturi (NCD Alliance Our Views, Our Voices Global Advisory Committee) presented on community mobilization. They noted that meaningful involvement is about recognising the power of people and ensuring that power reaches people. Consultative processes facilitated by the NCD Alliance have resulted in the Advocacy Agenda of PLWNCDs and further national agendas.
Day 3 looked at defining the next steps for operationalizing meaningful engagement with PLWNCDs in 2021-2022.
Ms Johanna Ralston, (Chief Executive Officer, World Obesity Federation) and Mr Joab Wako (Founder & Executive Director, Transplant Education Kenya) reflected on the medium to long term goals and possibilities for meaningful involvement and stressed the importance of establishing concrete next steps and leveraging WHO strengths.
Dr Bente Mikkelsen (Director, Department of NCDs, WHO) and Dr Guy Fones (Unit Head, Global Coordination Mechanism on NCDs, WHO) outlined the next steps. Dr Mikkelsen set out four game changers: power to the people – a new narrative inclusive of PLWNCDs; treatment targets for hypertension and diabetes; seats at decision making tables in international financing instruments; and co-creation in policy making. Dr Fones stressed the importance of including and stating the rights based and legal framework for sustaining meaningful engagement.
A report of the conclusions, action areas and activities will be documented and circulated. It was also confirmed that this would not be a one off event but an ongoing process in which participants will be engaged.
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