The second publication in the Intention to Action series, ‘Regional Reflections: Analysis from informal regional consultations with people living with noncommunicable diseases and mental health conditions,’ includes findings from informal regional consultations in the African Region, the Caribbean and North America, European Region, Eastern Mediterranean Region, Latin America and South-East Asia Region alongside three forums in the Western Pacific Region. It analyses the overarching consensus and regional priorities raised across the six WHO regions for the meaningful engagement of individuals with lived experience. Further, it outlines the key learnings derived from the priorities and implementation gaps identified at regional and national levels.
A global consensus on meaningful engagement
Discussions with nearly 400 individuals with lived experience alongside representatives from WHO, Member States and non-State actors, revealed striking similarities in how meaningful engagement is understood and aspired to globally. Regardless of nationality, age, gender, ethnicity, language, religion and other identities, participants affirmed that meaningful engagement efforts should be inclusive and welcoming to all, particularly groups that are marginalized, and involve safe spaces that are free from discrimination, judgement and stigmatization. Individuals with lived experience can no longer be on the margins of decisions that affect their health and well-being, and their experiences must be valued and compensated as expertise equal to that of other professionals. Meaningful engagement must also be consistent and continuous, and not simply an ad hoc event or tokenistic “tick-box” exercise performed to suit a specific need. The right to participate should also be guaranteed at the very top of political power structures and mandated through legislation and fair accountability mechanisms.
These common threads linking individuals living with NCDs, mental health and neurological conditions around the world provide powerful consensus for a balanced and consolidated global framework on meaningful engagement that will have strong relevance and applicability for all WHO Member States.
Further contextualizing and adapting approaches to meaningful engagement.
Alongside these similarities, the discussions also revealed important regional priorities and contexts that must be understood and accounted for. This will ensure that the WHO Framework on meaningful engagement can be further contextualized, adapted to and implemented within regions and countries to ensure it is effective and sustainable, with greater buy-in and better health outcomes for local populations.
For example, while a commitment to greater inclusion of groups that are marginalized was a central topic in all regional consultations, the populations that were identified as particularly vulnerable varied by region. The experience of refugees and migrants affected by NCDs and mental health conditions were at the forefront of discussions in the consultations from the Eastern Mediterranean and Africa region but were not as consistently noted across other regions. Children were prioritized as important stakeholders for Latin America, the Caribbean, and North America while both children and older adults were the focus in South-Eat Asia regional discussions.
Although reducing stigma was a consistent theme throughout all discussions, mental health stigma was a particular focus area in the Eastern Mediterranean region. Stigma related to underrepresented conditions were also deemed necessary to address, such as Wilson’s Disease and Sickle Cell Disease in the African region and aphasia, autism and other cognitive impairments in the European region. Participants from Latin America, the Caribbean and North America noted that stigmatized populations such as houseless persons and individuals living with substance abuse disorders had to be supported with access to the right care.
Strategies to build capacity for meaningful engagement among individuals with lived experience, policymakers and other key stakeholders also varied by region. Elevating local success stories and solutions that do not rely on the “global North” were prioritized in the African region. In the Eastern Mediterranean and South-East Asia region, participants highlighted that individuals with lived experience had to be empowered to share their stories and become community champions and role models for others. Addressing deeper, structural challenges were the focus in the European region, Latin America, the Caribbean and North America, from reducing burnout among healthcare providers to account for poverty, racism and other systemic factors that result in unequal health outcomes for different population groups.
Operationalizing the WHO Framework
Taken together, these similarities and regional priorities provide a comprehensive overview of meaningful engagement across the six WHO regions alongside important considerations on how to implement and operationalize the WHO Framework for Meaningful Engagement of People Living with Noncommunicable Diseases, and Mental Health and Neurological Conditions. Together with the first publication in the Intention to Action series, Regional Reflections has fed into the co-creation of the WHO Framework, which will be released on May 11, 2023. To further support the operationalization of the Framework once launched, additional derivative products will be developed to support implementation, including regional policy briefs building on this report’s findings.
