In this insight, Fiona Lyne reflects on the People as Partners forum discussion, exploring why integrated care requires a shift from involvement to shared power, recognising lived experience, community assets and partnership as central to how care is designed and delivered.
The People as Partners pillar has always felt to me less like one pillar among nine and more like the connective structure of the whole house. It is not only the foundation; it runs through the walls, beams and roof, holding the other parts of integrated care together. Without people, none of this can truly have any substance. During the International Foundation for Integrated Care (IFIC)’s forum discussion on People as Partners in integrated care, this point came through strongly from each of the panellists, from different perspectives.
Anne Lawlor spoke from her experience as a carer and advocate for families affected by 22q11. Giulia Lanfredi brought the perspective of care partners across Europe. Kerry Kuluski reflected on her research into patient and family experience. My own contribution came from my community development background, and from what I have learned from IFIC’s international community.
Connecting all of these views was a shared recognition that partnership is not a soft or optional part of integrated care. It is a design principle. Without it, integrated care risks becoming a managerial project: organisations align, budgets are discussed, data systems are improved, but people’s experience remains fragmented.
Partnership is more than participation
We use words such as engagement, involvement, consultation, co-production and shared decision-making very freely. They are all important, but they do not have the same meaning as partnership.
Kerry made a helpful point about engagement needing to be fit for purpose. A survey or focus group may be appropriate if we are trying to understand broad priorities. But if we are designing services with and for a community, then we need to move further along the continuum towards shared leadership and co-design.
For me, the real test is not whether people were involved along the way. The real test is whether something changed. Did resources move? Did a decision change? Did something that mattered to the community get implemented? Too often, people with lived experience are invited to comment on decisions that have already been made. That is not partnership; it is just a sign off exercise or stamp of approval for something that has already been decided.
Shared expertise matters
Anne’s contribution was a powerful reminder that lived experience is not simply a story. It is real world expertise. Families who live with complex conditions often understand the gaps in care more clearly than anyone else, because they are the ones navigating them every day.
Her experience of working with families and clinical champions to develop care coordination for 22q11 showed what can happen when family expertise and clinical expertise are treated as equal and shared. As Anne put it, listening and hearing are not enough. Systems have to act on what they hear.
That is where partnership becomes real. It is not just a meeting, a survey or a patient representative on a committee. It is a relationship and sharing of power that leads to action and change.
Care must become a collective responsibility
Giulia challenged us to think about hierarchy, power and the way care partners are still taken for granted. Her reflections on long-term care in Europe were sobering. Despite what became visible during the pandemic, care remains too often the responsibility of women, daughters, mothers and families, rather than a collective political priority.
This matters for integrated care because care partners are already holding much of the system together (and likely to hold even more responsibility in the future!). If we talk about people as partners but continue to rely on unpaid carers without recognition, support or influence, then we have not changed the underlying relationship.
Partnership requires time, trust and space. It also requires political choices about what we value and where we invest.
Communities are not hard to reach
I also wanted to challenge the language of ‘hard-to-reach’ or ‘seldom-heard’ communities. People are often perfectly able to speak; systems have not gone to the places where they are speaking.
If we are serious about people as partners, health and care systems need to be more visible in the fabric of communities. That means going beyond institutional spaces and working with the places where trust already exists: community groups, carers’ organisations, faith groups, local networks and voluntary organisations.
It also means starting with assets, not deficits. Too often, services and professionals enter communities by looking for gaps, problems and vulnerabilities. As Cormac Russell invites us to do, an asset-based approach asks what is already strong: what relationships, networks, knowledge and leadership already exist, and how systems can create space for communities to produce more of what they value.
Measuring what matters
One of the challenges is that partnership can be dismissed as difficult to measure. But there are practical examples that show its impact.
In Frome, community connection and volunteer health connectors were linked with reductions in emergency admissions while admissions rose in the wider county. In the Nuka System of Care, people are customer-owners, involved across governance, with a strong emphasis on storytelling, communication and relationships. In Botermarkt in Ghent, a community health centre model uses needs-based capitation and reinvests in community health, including initiatives co-designed with the community, for the community.
These examples show that people as partners is not just about experience, although experience matters deeply. It is really about value, prevention, trust, satisfaction, community resilience and better use of resources.
A shift in direction
Perhaps the most important shift is this: we need to stop asking how people can become more involved in our systems, and start asking how systems can become more involved in people’s lives and communities.
That requires a transfer of power. We must relocate authority closer to where care is lived and delivered: with people, families, carers and communities. It asks governance to include people meaningfully. It asks finance to invest in community capacity. It asks information and technology to support agency rather than exclusion. It asks the workforce to build relationships, not only deliver tasks.
People as Partners is hard work because people and communities are complex. But that is the point. Integrated care will only fulfil its promise if it is built around real lives, shared expertise and the communities where health and wellbeing are created every day.
Fiona Lyne
International Foundation for Integrated Care (IFIC)