Entitled “Intention to action”, WHO is launching a new publication series dedicated to the meaningful engagement of people living with noncommunicable diseases, mental health conditions and neurological conditions. The series is tackling both an evidence gap and a lack of standardized approaches on how to include people with lived experience into decision- and policy-making, and will provide a platform for individuals, and organizational and institutional champions, to share solutions, challenges and promising practices.
The first publication in the series ‘People power – Perspectives from individuals with lived experience of noncommunicable diseases, mental health conditions and neurological conditions’ includes six detailed case studies from 12 individuals with lived experience of diverse health conditions.
The case studies were developed using participatory research through focus groups with people with lived experience of NCDs, mental health conditions and neurological conditions in late 2021. Six key themes emerged from the discussions: power dynamics and power reorientation towards individuals with lived experience; informed decision-making and health literacy; community engagement across broader health networks and health systems; lived experience as evidence and expertise; exclusion and the importance of involving groups that are marginalized; and advocacy and human rights
Individual insights into establishing key themes
Seven individuals from the focus groups and five individuals from the WHO Global Coordination Mechanism on NCDs (GCM/NCDs) lived experience network were then invited to reflect further on these thematic areas. Each of the resulting case studies was created using a dyadic interview process, whereby two participants shared individual perspectives on similar themes in different contexts, facilitated by an independent external actor.
Taken together, the case studies have the potential to spark learning and action both locally and, potentially, on a larger scale. They highlight diversity in lived experiences, showcase best practices and reflect shared challenges. Their powerful narratives also provide evidence of why including the voices of those with lived experience is critical in the co-creation of relevant policies, programmes and services.
Advocacy and individual rights – Kwanele Asante, South Africa and Pei Yan Heng, Singapore
Kwanele and Pei Yan share their personal experiences and perspectives on the theme of advocacy and individual rights, including how inequalities, access to health care and the ability and right to participate in decisions that impact themselves and others affects health outcomes.
Through their stories, we learn that there is much work to be done to make meaningful participation a reality. As a citizen of Singapore and a person living with type 2 diabetes, Pei Yan shares her experience and observations of global inequalities in access to essential medicines for people living with diabetes. Kwanele’s story demonstrates how health inequalities impact black women experiencing breast cancer across South Africa.
Community engagement and networks – Mariana Gómez, Mexico and Phil Collis, United Kingdom
In this case study, Mariana and Phil share their personal experiences and perspectives on the theme of community engagement and networks, including how peer groups and communities become critical – often life-saving – pillars for people living with diverse health conditions.
Mariana describes how her community saved her life by providing access to the medicines and resources that were otherwise unavailable to her given the timing of her type 1 diabetes diagnosis in Mexico. Through Phil’s experience with stroke at the age of 17, we learn how local support groups in his hometown in the United Kingdom fuelled his desire to pay it forward and build supportive networks for stroke survivors.
Both experiences illustrate how communities provide urgently needed guidance and resources to address not just the clinical, but also the holistic and personal needs of individuals. Both are essential components to the meaningful engagement of people with lived experience.
Exclusion and the importance of involving groups that are marginalized – Olga Kalina, Georgia and Matt Jackman, Australia
Olga and Matt are two individuals living with mental health conditions. Through Olga, we learn how stigma and a lack of meaningful engagement by her health care providers can lead to disempowerment. Through Matt, we learn how social structures and trauma can lead to mental health challenges and deepen the experience of marginalization.
Both their case studies highlight how stigma, exclusion and lack of respect for human rights can have negative consequences for individuals experiencing mental distress.
Informed decision making and health literacy – Patrick Boruett, Kenya and Allison Ibrahim, Kuwait
Allison and Patrick share how health literacy and informed decision-making impacted the critical, early stages of their diagnoses in distinctly different ways.
For Patrick, a lack of understanding and internalized stigma at the point of his bipolar diagnosis in Kenya resulted in delayed acceptance of his condition. This subsequently impacted his well-being, relationships, the ability to trust health-care providers and the willingness to engage with his condition.
The opposite was true for Allison, whose clinician in Kuwait ensured that she was informed and equipped to manage her type 2 diabetes diagnosis and advocate for herself.
Living experience as evidence – Odireleng Kasale, Botswana and Prachi Kathuria, India
Odireleng and Prachi discuss how they, as strong, living and breathing sources of valuable evidence, can provide learning to others, including health-care providers and employers.
In Botswana, Odireleng experiences stigma on account of her substance and alcohol misuse, which unfairly impacts her credibility when advocating for the wellness of others experiencing similar challenges.
In Prachi’s experience of chronic respiratory challenges in India, the lack of understanding by health-care providers over many years not only impacted her diagnosis, but eventually led to an ongoing mistrust of medical systems – even when she developed endometriosis and polycystic ovarian disease.
Power dynamics and power reorientation towards individuals with lived experience – Paul T Conway, USA and Anu Gomanju, Nepal
In the final case study, Anu and Paul show how the impact of unequal power dynamics affects early diagnosis, stigma and representation of lived experiences.
Through Anu’s experience with rheumatic heart disease and congestive heart failure in Nepal, we learn how shifting the power dynamic from her clinicians to herself eventually led to meaningful participation in her care alongside driving her future community advocacy efforts for others. Paul’s experience with kidney disease and kidney failure in the USA shows how shifting power dynamics towards the voices of his peers not only elevated the value of the lived experience but also resulted in policy changes at the highest levels of government.
The second publication in the Intention to Action series will be launched on April 27, 2023. Both publications have fed into the co-creation of the WHO Framework for Meaningful Engagement of People Living with Noncommunicable Diseases, and Mental Health and Neurological Conditions which will be released on May 11, 2023.
