“Nothing for Us Without Us”: An Evaluation of Patient Engagement in an HIV Care Improvement Collaborative in the Caribbean

Bluemer-Miroite, Shay; Potter, Katy; Blanton, E. L.; Simmonds, Georgia; Mitchell, Conrad; Barnaby, Kenyatta; Zeribi, Karen Askov; Babb, Dale; Skyers, Nicola; O’Malley, Gabrielle; Anderson, C. W.

doi:10.9745/ghsp-d-21-00390

Cited by 4 publications

(1 citation statement)

References 51 publications

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“…Although meaningful engagement efforts have been demonstrated to be effective in improving health outcomes such as reducing hospital readmissions and improving adherence to treatment among young people and adults in mental health settings [27][28][29][30][31] or in longer survival, better clinical outcomes, higher quality of life, and a reduction of stigmatization for individuals living with HIV and AIDS [32][33][34] more evidence of impact is needed. The global health community has much to do in increasing the evidence base for the clinical and social benefits of meaningful engagement in NCDs, and mental health and neurological conditions.…”

Section: Plos Global Public Healthmentioning

confidence: 99%

WHO framework on meaningful engagement: A transformational approach to integrate lived experience in the noncommunicable disease and mental health agenda

Fisher,

Fones,

Arivalagan

et al. 2024

PLOS Glob Public Health

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As the global public health community continues to reflect and recover from the COVID-19 pandemic, noncommunicable diseases (NCDs), and mental health and neurological conditions remains one of the largest unmet gaps in progress towards meeting the Sustainable Development Goals (SDG). People living with these health conditions, particularly among those most marginalized, acutely understand the impact of these failures in global action and investment. Integrating lived experience into the NCD and mental health response can act as an accelerator for action. Through a participatory process to co-create the WHO Framework on Meaningful Engagement on NCDs, and Mental Health and Neurological Conditions, we conducted a mixed methods and semi-structured approach, including informal consultations, focus groups, in-depth interviews, online surveys, and a short film series, that captured the perspectives of 700 individuals from 111 countries, including 386 individuals with lived experience. Working alongside lived experience communities and other relevant stakeholders, we have established and co-created a set of principles, enablers and actions for operationalizing meaningful engagement, related to dignity and respect, power and equity, inclusivity and intersectionality, commitment and transparency, and institutionalization and contextualization. People with lived experience have a right to be equitably included in all levels of policy-setting, design and implementation of programs, and to have a central role in reforming and reorienting the structures and systems intended to address the complex multifactorial challenges that they face. WHO is committed to leveraging its role in global health to further operationalize meaningful engagement within WHO and its Member States.

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