Call to embed lived experience into healthcare decision-making

At the NICE Conference 2026 held in Manchester, Jano Goodchild, Participation and Co-production Director at Public Voice, delivered a compelling call to embed lived experience into the heart of healthcare decision-making, as part of a session focused on the role of people and communities in improving national health outcomes. 

Jano joined a panel of figures working across health, research and patient advocacy. The session was chaired by Lesley Goodburn, Head of Public Involvement and Engagement at NICE. The other speakers on the panel were: 

• Peter Bower, Patient and Community Network Leadership group member 

• Anita Kambo, Community and Place-based Researcher, NICE  

• Dr Scott Purdon, Head of Patient Advocacy, Myeloma UK, and Chair of the Charity Medicines Access Coalition (CMAC) 

• Dr Rebecca McPhillips, Senior Public Engagement Analyst, NICE 

• Bernadette Warren, Patient and NICE Committee Member. 

Strengthening the role of communities 

In her address, Jano outlined the work of the NICE Voluntary and Community Sector (VCS) Network Leadership Group, emphasising its central purpose: ensuring that voluntary and community sector perspectives are meaningfully embedded in the work of the National Institute for Health and Care Excellence. 

She described how the leadership group aims to shape the NICE Voluntary and Community Sector Forum direction, to input into the content of the quarterly meetings and to co-chair the network meetings with a member of the people and communities’ team the network actively shapes its own agenda, working collaboratively with members to design meeting content and priorities. The forum brings together VCSE organisations together to share experiences, influence NICE’s strategy, and ensure that guidance reflects real-world needs.

Jano highlighted the forum’s commitment to inclusion, particularly its focus on engaging underrepresented communities such as LGBTQ+ groups, ethnically diverse populations and people with disabilities.  

This is about creating a space where organisations can connect, learn and co-develop”, she explained, noting that the forum meets regularly and aims to make a tangible difference for those most affected by NICE recommendations. 

From engagement to co-production 

A central theme of Jano’s talk was the shift from consultation to true co-production. She explained how the VCS Network Leadership Group co-chairs meetings alongside NICE’s People and Communities team, helping to strengthen transparency and shared leadership. 

The group also develops short-life working groups on key issues, such as digital exclusion, and supports ongoing learning and development across the sector. These efforts, she said, are aligned with NICE’s broader strategy of “working alongside people and communities”, ensuring that engagement is not tokenistic but embedded throughout the lifecycle of healthcare guidance. 

Our core message is that VCS leadership is about partnership”, Jano told the audience. “It’s about building trust and delivering impact together. 

Closing the session, speakers were asked to reflect on what success would look like by the next conference.  Jano said she hopes to see more NICE guidance developed directly with people who have lived experience, resulting in recommendations that are more reflective of working with communities rather than to them.