World Health Organisation
International Patient Focus Groups
Learning to inform a new WHO Framework for the effective and equal engagement of PLWNCDs.
OUTCOME & IMPACT
Evidence, learning and recommendations to inform the development of the future WHO guiding principles and framework.
Increased engagement between PLWNCDs and the WHO.
Clearer understanding of the need and significanT benefits OF engaging effectively with PLWNCDs.
“This was really excellent work. Delivered with considerable thought, skills and compassion. The whole process, the design, the delivery and analysis was exceptional. I can't thank you enough”
Head, Global Coordination Mechanism on Non-communicable Diseases; WHO
THE CHALLENGE
The diversity of stakeholders to engage. Cultures, timezones, needs and experiences.
The personal nature of the subjects being discussed. Encouraging open and honest dialogue in a ‘safe space’.
Multiple participants with mental health challenges.
THE AUDIENCES
PLWNCDs
The WHO
Key stakeholders within health.
EVENT SOLUTIONS
Six online focus groups with participants representing 35 countries and 39 NCDs exploring advocacy with PLWNCDs from around the world.
Focus groups explored the role and meaning of advocacy for PLWNCDs, sharing their learning, the benefits and the challenges of advocacy. How they could feel more supported and engaged in decisions and, what they need to be empowered to influence the things that matter to them.
Six paired dyad case study interviews exploring:
power dynamics and power reorientation towards individuals with living experience
informed decision-making and health literacy
community engagement across broader networks and health systems
living experiences as evidence and expertise
exclusion and the importance of involving marginalised groups
advocacy and human rights
Other engagement activities
Advocacy insight
Deliberative discussions and story sharing
Partnership delivery and skills transfer with WHO