Helena, a paediatrician and mother, living in Sheffield in the United Kingdom of Great Britain and Northern Ireland, was already living with multiple disabilities caused by an auto-inflammatory disease when she was diagnosed with cancer in 2009.
“I went from being a very active, very dynamic paediatrician, mother, and athlete […] to being in a wheelchair. I was extremely independent, and – as a woman – felt very strongly about being a role model for my boys. I think that is what you have to learn to hang onto, that on the inside, you haven’t changed.”, she recounts.
Helena is one of six people in a short film documentary that sheds light on the experiences of people living with noncommunicable diseases (NCDs) and mental health conditions around the world. People with lived experience often can offer valuable expertise and powerful narratives on how to manage and improve their individual health as well as the health of fellow community members. Their first-hand insights can help shape policies, create better health programmes, and inspire others to contribute.
WHO is dedicated to advancing the meaningful engagement of people living with NCDs and mental health conditions worldwide, and has recently established a range of activities and platforms to support this goal. The latest is a new film series on the topic in all six UN languages.
Watch the entire 30-minute documentary, “Nothing for Us, Without Us: listening and learning from people with lived experience”, on WHO’s YouTube channel:
In the municipality of Ghobeiry in Lebanon, Ali motivates others in his community to exercise, eat better food and lead a healthier life, after being diagnosed with type 2 diabetes in 2017.
“People may not be taking care of themselves, not because they can’t buy medicine, or are without access to healthy food. They would have all the tools, but they are unable to use them for underlying mental reasons.” he says.
Individuals and communities with first-hand experience in living with NCDs and mental health conditions hold the key to designing effective, inclusive, equitable health interventions that leave no one behind. Their voices can unlock opportunities to overcome barriers in accessing and sustaining health care. The right to participate in one’s care is also a fundamental part of the human right to the highest attainable standard of health.
Watch Ali’s story:
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 our needs, our choices, voices, and experiences have to be prioritized. We need to tell you what support looks like for us. We need to tell you what a system that is just and equal and fair looks like for us. We need to tell you what human rights respecting treatment looks like for us.”, as she calls upon policy-makers and health professionals.
Amid the complex and interconnected global health landscape, the meaningful engagement of people with lived experiences is increasingly becoming a mainstay. In light of the global epidemic of NCDs, the recent COVID-19 pandemic, and persisting health inequities, understanding the complex determinants of health conditions and upholding principles of respect, value and dignity are equally crucial.
Watch Hauwa’s story:
“When I received the diagnosis, it was […] difficult to deal with a situation that was now mine. Even though I saw other people with diabetes […], they were much older, and I didn’t know anyone my age who had diabetes. That’s why it’s not easy to face it., recalls Dr Mark Barone, the Brazil-based vice-president of the International Diabetes Federation.
Meaningful engagement of people with lived experiences also pays particular attention to the voices of marginalized or neglected groups and communities. Community networks play a vital role in providing people with access to critical information and support and breaking down siloes and barriers.
Watch Mark’s story:
Community action on breast cancer: LaVerne’s lived experience in Australia
LaVerne, a breast cancer survivor, mother, and community leader from Redfern, Australia, regularly organizes screenings and health promotion activities with Aboriginal women.
“We have screening days where we bring the mammogram bus. We have lunch, we get hairdressers in, beauty practitioners. It’s a real ladies’ day. It enables them to feel free and talk among themselves. Aboriginal women, you know, young women, they don’t want to go and take all their clothes off and get tested.”, she points out.
Crucially, meaningful engagement and co-designing health policies imply a shift from the individual as a passive user to an empowered and valued agent of change. People with lived experience do not only require a seat at the table of decision-making, but should be able to drive processes, co-create programmes, and implement contextual solutions.
Watch LaVerne’s story:
“I am learning how to undertake advocacy in this sector, […] as I found that not all people with rheumatic heart disease are united and there is no group or support system.”, says Anu Gomanju, a public health professional and graduate student in Nepal, who was diagnosed with the health condition at the age of 11. “If we can come as one, we can share our challenges or experiences as my problem could be a solution for someone else.”, she adds.
Despite recent progress on this topic, meaningful engagement does all too often not take this hurdle from intention to action and risks to remain a tokenistic tick-box exercise.
Watch Anu’s story:
“My hopes for the future for everyone with NCDs is that they’re valued and involved in planning their own care, that they have a louder voice to policymakers, that they’re much more involved right from the beginning.”, concludes Helena in the United Kingdom of Great Britain and Northern Ireland.
Watch Helena’s story:
In early 2022, WHO’s Global Coordination Mechanism on NCDs (GCM/NCD) within the Global NCD Platform co-convened several regional consultations and focus groups in all WHO-regions.
“It is now clearer than ever that people with lived experience of NCDs around the world face many challenges to meaningful engagement,” says Dr Svetlana Akselrod, Director of the WHO Global NCD Platform. “What has been missing is a clear roadmap for actions, along with connections with all levels of WHO and with WHO Member States. The roadmap and connections have now been established, and this is a significant achievement.”
Insights from all the consultations and the film are feeding into the co-development of the WHO Framework for meaningful engagement of people living with NCDs and mental health conditions, which is scheduled to be released in 2023.
Meaningful engagement of people living with NCDs and mental health conditions emphasizes the diversity and intersectionality of individuals and communities. Aspects of social and political identities, such as gender, ethnicity, religion and socioeconomic status to name but a few, overlap and create multiple forms of power and privilege.
By understanding and integrating these multiple layers and perspectives, policy makers, health professionals, health providers and people with lived experiences can move from traditional top-down or one-size-fits-all models of care to co-designing health programmes, policies and services.
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