Helena, a pediatrician 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 pediatrician, mother and athlete […] being in a wheelchair. I was fiercely independent and – as a woman – felt very strongly the desire to be a role model for my boys. I think you have to learn to stick to the fact that you haven’t changed on the inside,” she says.
Helena is one of six people in a short documentary that sheds light on the experiences of people living with non-communicable diseases (NCDs) and mental illness around the world. People with lived experience can often offer valuable experiences and powerful narratives about how to manage and improve their individual health and the health of other community members. Their first-hand insights can help shape policy, create better health programs, and inspire others to contribute.
WHO is dedicated to advancing the meaningful engagement of people living with noncommunicable diseases and mental health conditions worldwide, and has recently established a range of activities and platforms to support this goal. The latter is a new film series on the subject in all six UN languages.
Watch the full 30-minute documentary Nothing About Us Without Us: Listening and Learning from Live Experiences on the WHO YouTube channel:
Type 2 diabetes in a changing environment: Ali’s lived experience in Lebanon
In Lebanon’s Ghobeiry municipality, Ali motivated others in his community to exercise, eat better and lead a healthier life after being diagnosed with type 2 diabetes in 2017.
“People may not take care of themselves, not because they can’t buy medicine or don’t have access to healthy food. They would have all the tools but are unable to use them due to underlying mental reasons. he says.
Individuals and communities with first-hand experience of 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 to accessing and maintaining health care. The right to participate in self-care is also a fundamental part of the human right to the highest attainable standard of health.
Check out Ali’s story:
Gender-based violence and mental health: the lived experience of Hauwa in Nigeria
Hawa, 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 must be prioritized. We need to tell you what support looks like for us. We need to tell you what a system that is fair, equal and fair looks like to us. We need to tell you what human rights-respecting treatment looks like for us,” as she urges politicians and health professionals.
Against the backdrop of a complex and interconnected global health landscape, the meaningful engagement of people with lived experience is increasingly becoming a mainstay. In light of the global epidemic of noncommunicable diseases, the recent COVID-19 pandemic, and continuing health inequities, understanding the complex determinants of health conditions and upholding the principles of respect, value, and dignity are equally important.
Check out Hauwa’s story:
Type 1 diabetes and the next generation of leaders: Mark’s lived experience in Brazil
“When I got the diagnosis, it was like this […] hard to deal with a situation that was now mine. Although I saw other people with diabetes […], were much older and I didn’t know anyone my age with diabetes. That’s why it’s not easy to face, recalls Dr. Marc Barone, the Brazil-based vice president of the International Diabetes Federation.
Meaningful engagement of people with lived experience also pays special 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 in breaking down silos and barriers.
Check out Mark’s story:
Community action against breast cancer: the lived experience of LaVerne in Australia
LaVerne, a breast cancer survivor, mother and community leader from Redfern, Australia, regularly hosts screenings and health promotion activities with Aboriginal women.
“We have screening days where we bring the mammography bus. We have lunch, recruit hairdressers, beauty specialists. It’s a real ladies day. It allows them to feel free and talk to each other. Aboriginal women, you know, young women, they don’t want to go take all their clothes off and get tested,” she points out.
Most importantly, meaningful engagement and co-design of health policies implies a shift from the individual as a passive consumer to an empowered and valued agent of change. People with lived experience not only require a seat at the decision-making table, but must be able to manage processes, co-create programs, and implement contextual solutions.
Check out LaVerne’s story:
Advocacy for rheumatic heart disease: Anu’s lived experience in Nepal
“I’m learning how to advocate in this sector, […] because 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 specialist and student in Nepal who was diagnosed with the condition at the age of 11. “If we can come as one, we can share our challenges or experiences, as my problem can be someone else’s solution,” she adds.
Despite recent progress on this topic, meaningful engagement too often does not cross this intention-to-action hurdle and risks remaining a token tick-box exercise.
Check out Anu’s story:
Actions Accelerated Now: Helena’s Live Experience in the United Kingdom of Great Britain and Northern Ireland
“My hopes for the future for everyone with non-communicable diseases is that they are valued and involved in planning their own care, that they have a stronger voice to policy makers, that they are much more involved from the start,” concludes Helena in the United kingdom of great britain and northern ireland.
Check out Helena’s story:
Regional consultations, case studies and a new framework for meaningful engagement
In early 2022, the WHO Global NCD Coordination Mechanism (GCM/NCD) within the Global NCD Platform jointly convened several regional consultations and focus groups in all WHO regions.
“It is now clearer than ever that people living with NCDs around the world face many challenges to meaningful engagement,” said Dr Svetlana Axelrod, Director of the WHO Global Platform on NCDs. “What has been missing is a clear roadmap for action, together with links to all levels of WHO and to WHO Member States. The road map and connections are already in place and this is a significant achievement.”
The insights from all the consultations and the film feed into the joint development of the WHO Framework for Meaningful Engagement of People Living with Noncommunicable Diseases and Mental Illness, which is planned for release in 2023.
The meaningful engagement of people living with non-communicable diseases and mental illness highlights the diversity and interconnectedness of individuals and communities. Aspects of social and political identities, such as gender, ethnicity, religion, and socioeconomic status, to name a few, overlap and create multiple forms of power and privilege.
By understanding and integrating these multiple layers and perspectives, policymakers, health professionals, health care providers, and practitioners can move from traditional top-down or one-size-fits-all models of care to collaborative design of health programs, policies, and services .