Meaningful Community Engagement
Lived Expertise Leads ALIGN-T1D
Meaningful Community Engagement is foundational to ALIGN-T1D.
For ALIGN-T1D, meaningful engagement goes beyond consultation. It involves sustained participation of people with lived experience and expertise across strategy, governance, implementation, monitoring, learning, and advocacy.
We believe that people living with type 1 diabetes (T1D) hold knowledge that no clinical training or external expertise can replicate. This is not patient perspective. It is expertise.
The Meaningful Community Engagement Principles reflect our commitment to building systems, partnerships, and governance models that recognize lived expertise as essential leadership and strategic expertise.
Lived experience is expertise.
Six Guiding Principles
Grounded in WHO’s Framework for Meaningful Engagement of People Living with NCDs (2023) and adapted for ALIGN-T1D’s multi-stakeholder model, these Principles define how lived expertise is integrated into governance, decision-making, implementation, accountability, and learning across the Alliance.
1. Commit to Long-Term Partnerships
ALIGN-T1D approaches engagement as an ongoing relationship rather than a one-time activity. Partners involve people with lived expertise early and maintain those relationships over time in ways that reflect local needs and national health goals.
2. Offer Responsive and Strategic Funding
Participation should not come at a personal cost. ALIGN-T1D partners provide practical support that makes it possible for people to show up and contribute. Support may include stipends, travel costs, translation, childcare, internet access, or other resources that respond to emerging needs.
3. Communicate with Clarity and Consistency
Clear, honest communication builds trust. ALIGN-T1D partners share roles, timelines, and how decisions are made. They set realistic expectations, flag conflicts of interest, and document how community input was used.
4. Support Capacity Strengthening and Inclusive Participation
Meaningful participation requires preparation, access to information, and the opportunity to build skills and confidence. ALIGN-T1D partners provide orientation and plain-language materials, use facilitation approaches that support equitable contribution, and are attentive to power dynamics that may limit who can participate and how.
5. Co-Create Goals, Metrics, and Reporting Frameworks
People with lived expertise should help define what success looks like and how progress is measured. ALIGN-T1D partners engage communities in setting priorities and defining outcomes, and document how input shaped decisions and learning.
6. Actively Seek and Respond to Feedback
Continuous feedback helps ensure ALIGN-T1D remains responsive and accountable. ALIGN-T1D partners create safe, accessible channels for people to raise concerns and share observations, including anonymously, and report on what they heard and what actions were taken.
How This Works Across ALIGN-T1D
The Principles are intended to shape how ALIGN-T1D operates in practice. They are reflected in governance structures, country engagement processes, funding requirements, implementation planning, reporting expectations, and learning activities across the Alliance.
The examples below illustrate how meaningful community engagement is being embedded throughout ALIGN-T1D’s work.
Governance and Accountability:
Community representatives sit on ALIGN-T1D’s Strategic Steering Group (SSG), Strategic Advisory Group (SAG), and Secretariat leadership (Breakthrough T1D). SSG community representatives lead formal reviews of how the Principles are being applied at least twice a year. SSG and SAG community representatives jointly support the design, distribution, and review of periodic partner surveys.
Country Engagement and Program Design:
Countries joining ALIGN-T1D are required to describe how people living with T1D, caregivers, and community organizations are involved. Community representatives participate in country planning meetings, and proposal templates include recommended activities to strengthen the role of T1D communities.
Funding and Proposal Development:
Implementing partners are required to include a dedicated section on meaningful engagement in proposals. This means identifying specific opportunities for community involvement across all areas of work and budgeting for the costs of that participation.
Monitoring, Learning and Reporting:
The ALIGN-T1D Secretariat tracks community engagement across funded projects, including peer networks established, people with lived expertise engaged in governance, and peer support leaders trained. Partners are also asked to share specific examples of how people with lived expertise shaped their work during each reporting period.