Helena, a pediatrician and mother from Sheffield, United Kingdom of Great Britain and Northern Ireland, was already handicapped by multiple autoinflammatory diseases when she was diagnosed with cancer in 2009.
“I was a very active, very dynamic pediatrician, mother and athlete. […] to get into a wheelchair. I am very independent and as a woman I felt very strongly about being a role model for my sons. It hasn’t changed,” she says.
Helena is one of six short film documentaries that shed light on the experiences of people struggling with non-communicable diseases (NCDs) and mental health conditions around the world. People with lived experience can often provide valuable expertise and powerful stories about how to manage and improve not only your own health, but the health of your peers in your community. helps shape policy, create better health programs, and inspire others to contribute.
WHO is dedicated to promoting meaningful engagement of people with NCDs and mental health conditions around the world and has recently established a range of activities and platforms to support this goal. The latest is a new film series on this topic in all six UN languages.
Watch the full 30-minute documentary Nothing for Us, Without Us: Listening and Learning from People with Live Experiences on WHO’s YouTube Channel.
Type 2 diabetes in a changing environment: Ali’s lived experience in Lebanon
In the Lebanese city of Gobeili, after being diagnosed with type 2 diabetes in 2017, Ali motivates people in his community to exercise, eat better and live healthier lives.
“People may not be taking care of themselves, not because they can’t afford medicine or access healthy food. They have all the tools, but the bottom line is I can’t use them for spiritual reasons,” he says.
Individuals and communities who have firsthand experience with NCDs and mental health conditions are key to designing effective, inclusive and equitable health interventions that leave no one behind. Their voices unlock opportunities to overcome barriers in accessing and maintaining healthcare. The right to participate in one’s care is also a fundamental part of the human right to the highest attainable standard of health.
Read Ali’s story.
Gender-Based Violence and Mental Health: Hauwa’s Real Experience in Nigeria
Hauwa, a mental health and human rights advocate from Nigeria, was sexually assaulted in 2013 and diagnosed with bipolar disorder two years later.
“We know what is best for us. That is why we must prioritize our needs, our choices, our voices and our experiences. We must tell you what support is like.” We need to explain what a fair, equal and equitable system is to us. Call a person or medical professional.
In a complex and interconnected global health landscape, the meaningful engagement of people with hands-on experience is becoming increasingly mainstream. Given the global prevalence of NCDs, the recent COVID-19 pandemic, and persistent health disparities, it is equally important to understand the complex determinants of health status and uphold principles of respect, value and dignity.
Check out Hauwa’s story.
Type 1 Diabetes and Next Generation Leaders: Mark’s Live Experience in Brazil
“When I was diagnosed with […] It’s hard to deal with my current situation. […], they were much older and did not know anyone with diabetes their age. That’s why it’s not easy to face it. Dr. Marc Barone, vice president of the International Diabetes Federation, based in Brazil, recalls.
The meaningful engagement of people with lived experience also pays particular attention to the voices of marginalized or neglected groups and communities. Community networks play a key role in giving people access to critical information and support, and in breaking down silos and barriers.
Watch Mark’s story:
Community action against breast cancer: Laverne’s real life experience in Australia
Laverne, a breast cancer survivor, mother and community leader from Redfern, Australia, regularly works with Aboriginal women in screening and wellness activities.
“We have an exam day that brings the mammogram bath. Aboriginal women, young women, don’t want to be undressed and tested,” she points out.
Importantly, meaningful engagement and co-design of health policy means moving individuals from passive users to empowered and valued agents of change. People with lived experience not only need to sit at the decision-making table, they need to be able to drive processes, co-create programs, and implement solutions in context.
Check out LaVerne’s story.
Advocating Rheumatic Heart Disease: Anu’s Live Experience in Nepal
“I am learning how to do advocacy in this area. […] Because I have found that not all people with rheumatic heart disease are united and there are no groups or support systems. So we can share our challenges and experiences,” she adds.
Despite recent advances on the topic, meaningful engagement often doesn’t remove this hurdle from intention to action, and risks remaining a cookie-cutter checkbox exercise.
Check out Anu’s story.
Action Now Accelerates: Helena’s Real Life Experience in the United Kingdom of Great Britain and Northern Ireland
“My hope for the future of everyone with NCDs is that they are valued and involved in planning their own care, have a louder voice with policy makers, and are more involved from the start. ” concludes Helena. United Kingdom of Great Britain and Northern Ireland.
Check out Helena’s story.
A new framework for regional consultations, case studies and meaningful engagement
In early 2022, WHO’s Global Coordination Mechanism for NCDs (GCM/NCD) within the Global NCD Platform co-hosted several regional consultations and focus groups in all WHO regions.
Dr Svetlana Akselrod, Director of the WHO Global NCD Platform, said: “What is missing is a clear roadmap for action and linkages with all levels of WHO and her WHO Member States. Roadmaps and connections have been established and this is a great achievement.”
Insights from all consultations and films have been incorporated into the joint development of the WHO Framework for Meaningful Engagement of People with NCDs and Mental Health Conditions, to be released in 2023.
Meaningful engagement of people with NCDs and mental health conditions highlights the diversity and intersectionality of individuals and communities. Aspects of social and political identity such as gender, ethnicity, religion and socioeconomic status overlap to create different forms of power and privilege.
By understanding and integrating these multiple layers and perspectives, policy makers, health professionals, health care providers, and those with hands-on experience can move from traditional top-down or one-size-fits-all models of care to Medical Programs, Policies and Services.