People as Partners in Care as a Pillar of Integrated Care

Introduction

The International Foundation for Integrated Care (IFIC) hosted the fourth in IFIC’s series of forum discussions on the Nine Pillars of Integrated Care in June 2026, bringing together an international panel – spanning lived experience and family carer experience, informal carer advocacy, academic research, and community development – to examine what it means to treat people as partners in care: what is working, what is not, what needs to change, and what genuine partnership might look like if it were the norm rather than the exception. The panel discussion was chaired by IFIC’s Chief Executive, Niamh Lennox-Chhugani.

The panel comprised Anne Lawlor, chairperson of the 22q11 Ireland support group and herself a family carer; Giulia Lanfredi of Eurocarers, which amplifies the voice and needs of informal carers across Europe; Kerry Kuluski of the University of Toronto, who holds a research chair in patient and family-centred care; and Fiona Lyne, IFIC’s Director of Communications, whose background is in community development.

Of all the Nine Pillars, this was the one the panel was most inclined to describe not as a pillar at all but as the foundation on which the others stand. Partnership with people, families and communities is the point at which the purpose of integrated care is tested: without it, governance becomes institutional self-management, technology becomes a tool for exclusion, and financing flows to institutions rather than to the people and places where health is created. Where it is present, it is the difference between care that is done to people and care that is built with them.

This paper synthesises the discussion and audience contributions from the Forum under three themes: the current situation, the changes required, and a utopian vision for the future of people as partners in care.

1. The current situation: what is working and what is not

1.1 Where partnership is beginning to work

The Forum opened with a deliberate provocation: is people as partners in care truly the foundational pillar, or simply the one everyone agrees on because it asks little of us? The panel was clear that it is foundational – and equally clear that genuine partnership demands far more change than the comfortable consensus around it would suggest.

Even so, panellists identified real, if uneven, progress. Anne described a slow but discernible shift, over roughly the last four years, away from the tokenistic involvement that had characterised her early experience of an Irish health service patient forum towards something more meaningful. Her most powerful illustration was drawn from her own community: years of advocacy by parents, working in partnership with clinical champions, eventually secured a dedicated care coordinator and a 22q11 clinic. Although still fledgling and currently paediatric, it has, in her words, transformed the lives of the 300 families it serves. The mechanism, she argued, is the bringing together of patient, parent and family expertise with clinical expertise as equal and shared – the point at which “the magic happens.”

Kerry reinforced that such partnership is achievable and that pockets of excellence already exist, where teams have built relational, partnership-based working into their day-to-day practice. The challenge, she noted, is that the experience is inconsistent: a family may encounter genuine partnership in one service and something quite different in another. She also pointed to a maturing understanding of engagement, helped by frameworks that distinguish degrees of involvement and allow practitioners to be intentional about which they are using and why.

1.2 The persistent challenges

Alongside these signs of progress, the Forum surfaced a set of deep-seated obstacles that continue to keep genuine partnership the exception rather than the rule.

The language of partnership and the risk of tokenism

The Forum returned repeatedly to the loose, interchangeable use of words such as involvement, engagement, participation, co-production, person-centredness and shared decision-making. Fiona argued bluntly that, however related and important, none of these is partnership, and that the field too readily throws the words around. Kerry offered the engagement continuum described by Carman and colleagues[1] as a way of distinguishing consulting from involving from genuine shared leadership, stressing that each is legitimate only when it is fit for purpose: a survey may suffice for understanding a community’s priorities, but building services with and for that community requires co-design and shared decision-making. Fiona’s test of authenticity was whether anything actually changed – whether resources moved, decisions altered, or something important to the community was implemented – rather than people with lived experience being asked to sign off on decisions already made. Arnstein’s Ladder of Citizen Participation,[2] with citizen control at its top rung, framed the ambition: moving people from passive consultation towards genuine power over decisions that affect them.

Power, hierarchy and the reluctance to relocate authority

Several panellists located the real difficulty in power. Giulia called for a humble interrogation of the traditional hierarchies of the care space. She highlighted the power imbalance between professionals who hold titles and the informal carers, patients and people with care needs who do not and argued that this relationship must be re-examined from both sides, beginning with how people see themselves within it. Fiona invoked the language of relocating authority through asset-based community development[3] as genuinely transferring power to communities rather than simply inviting them further into existing systems. The more radical reframing, she suggested, is to stop asking how people can be more involved in our systems and instead ask how systems can become more involved in people’s lives and communities. Anne added the uncomfortable corollary: those who write the cheques and sign off the policies must be willing to let a degree of control go, which is rarely easy.

Time, productivity and the squeeze on relational care

Both Kerry and Giulia identified time as the binding constraint. In Kerry’s research, health and care professionals describe wanting to build relational ties with the people they care for but working in environments that are shaped by lack of time and stress constrains this. Giulia drew out the policy contradiction: politicians and policymakers talk the talk of meaningful involvement while simultaneously pressing health and care professionals to do more with less. Partnership, as Niamh observed, is continuous work; yet systems consistently treat the relational labour it requires as a luxury to be squeezed when productivity demands intensify.

Partnership as a specialist function rather than everyone’s work

Fiona warned that integrated care is too often approached as a managerial project, because people and communities are messy and processes are tidier. Niamh extended the point: partnership frequently becomes the responsibility of a particular team whose job it is to “do the engagement,” when the ambition is to make it everybody’s job. Treating partnership as a discrete function rather than a way of working allows the rest of the system to continue much as before.

Expertise overlooked: lived experience as consultation, not asset

Anne argued that the field talks about lived experience but rarely names the expertise it carries. Parents, she observed, are experts on their children; the people receiving care generally have the solutions. Yet that expertise is, in her experience, an asset that has not been properly tapped. Crucially, listening and hearing are not enough; what is heard must be acted upon and put into practice. She noted, pointedly, that her own daughter was listened to only when 22q11 Ireland funded the necessary research[4], a reminder that recognition without redistribution of resource or power changes little.

Fiona connected this to asset-based community development,[5] which approaches a community through the networks, faith groups, carers’ groups and clubs that already exist rather than through a deficit lens of gaps and vulnerable populations. She drew, too, on Toby Lowe’s critique[6] of transactional public services: people’s lives do not arrive in neat transactions, but are shaped by where they live, their work and their circumstances.

Systems built around institutions, not communities

Fiona reminded the Forum that a large majority of what determines health and wellbeing lies outside physical conditions, in social connection, housing, work and circumstance, yet systems under-invest in communities, prevention and early intervention that would keep people well. She challenged the notion of “hard-to-reach” or “seldom-heard” communities: people are well able to speak; systems have simply not gone to the places where they are speaking. She cited Health Justice Australia’s practice of placing legal advisers within health clinics,[7] after a large share of problems presented to general practitioners (GPs) turned out to stem from circumstance rather than physical health. Niamh underlined the scale of the point: only around five per cent of care is delivered by health and care professionals, with the vast majority provided by people caring for themselves and by their families and communities, a reality the design of formal systems rarely reflects.

Care undervalued, gendered and politically neglected

Giulia struck the most sober note. The lessons of the pandemic, she argued, have largely not been learned: care has once again been taken for granted, and continues to fall disproportionately on women, on daughters and mothers, rather than being recognised as a collective responsibility. While circumstances differ between countries, the common thread is the failure to treat care as a political priority, located where the money and the decisions are. In a period of difficult politics, she suggested, it is more important, not less, to insist that care is the foundation of everything.

2. What needs to change

The Forum identified a series of interconnected changes related to how partnership is practised, where power sits, how expertise is valued, what conditions surround the work, where care reaches, and what we choose to measure. Taken together, such changes will make people as partners in care a reality rather than an aspiration.

2.1 Move from consultation to genuine partnership

The first shift is to be honest about which form of engagement is being undertaken, and to choose it deliberately. Consultation and involvement are not partnership, and dressing one up as the other erodes trust. The test the Forum proposed is consequential rather than procedural: did resources move, did a decision change, was something important to the community implemented? Co-production was identified as the form closest to genuine partnership, but the deeper requirement is intentionality, matching the depth of engagement to its purpose and being willing to move along the continuum towards shared decision-making where the purpose demands it.

2.2 Relocate power and authority – and treat care as a collective priority

Genuine partnership requires the redistribution of power, not merely the redistribution of invitations to participate. That means interrogating the hierarchies of the care relationship from both sides, and being willing to relocate authority to people and communities, thus inverting the direction of travel so that systems move into people’s lives rather than the reverse. It also requires those who hold financial and policy control to let some of it go. At a societal level, the Forum was clear that this depends on treating care as a collective responsibility and a political priority, rather than an inexhaustible resource quietly supplied, disproportionately, by women.

2.3 Recognise and mobilise expertise as an asset

People, families and carers should be recognised as carrying expertise equal to clinical expertise, and that expertise should be acted upon rather than merely heard. The Forum advocated an asset-based approach that begins with the networks and capabilities already present in a community, and pointed to dedicated coordination roles, such as the care coordinator secured by Anne’s community, as a practical mechanism for sustaining genuine, action-oriented partnership built on trust, openness and a shared goal.

2.4 Build the enabling conditions: time, culture and leadership

Partnership cannot be exhorted into existence; it requires enabling conditions. Kerry argued for integrating partnership into the routines that already exist, asking, for example, whether families are inside the clinical huddle and whether their perspective is included in decision-making as evidence equal to the clinical evidence, while simultaneously building the broader infrastructure of culture and leadership support around teams. That means leadership that expects and protects the additional time relational work requires, and a culture in which partnership is everybody’s responsibility rather than the preserve of a specialist function.

2.5 Reach beyond the clinic into communities

Because most health is shaped outside clinical settings, partnership must extend into communities and address the wider determinants of health. The Forum called for systems to become visible and present where people already are, rather than waiting for people to come to them.  This also means enabling health and care professionals, who are themselves members of communities, to work outside institutional walls, and investing in prevention and in the assets communities already hold. As Niamh noted, building trust and visibility over time is demanding but yields a substantial return for the wider system.

2.6 Rethink what we measure

What gets measured matters, often perversely so. The Forum challenged whether current metrics capture the value of partnership at all. Giulia offered the simplest test of success: the people involved – families, carers and paid staff alike, all currently overwhelmed, will report better health and wellbeing. Kerry reframed measurement around learning cultures, noting that there is no finish line, and proposed asking people whether they feel valued, whether they are included on their own terms, and whether they feel part of ongoing improvement. Anne pointed to satisfaction, to partnership being normalised in policy and practice until it is unremarkable, and to the cost-effectiveness of doing things differently, as she said, “if we want different, we have to do different.”

Fiona offered three concrete examples of partnership producing measurable, “hard” outcomes. The first was the Compassionate Frome / Health Connectors model,[8] which built a community volunteer workforce and a social-prescribing approach and was associated with a reduction in emergency admissions even as the surrounding area saw a sharp rise. The second was the Nuka System of Care in Alaska,[9] owned by its “customer-owners,” who sit across its governance and are continually surveyed for satisfaction, and where every member of staff, from porter to administrator, receives training in communication, relationships and trust. The third was the Botermarkt community health centre in Ghent,[10] whose needs-based capitation model allows savings from improved community health to be reinvested in the community, including a co-designed grief walk created by and for a population speaking many different languages.

3. A utopian vision: the future of people as partners in care

Drawing the threads of the discussion together, a vision emerges of what meaningful partnership with people and communities in care could look like if the barriers identified were genuinely addressed and the changes called for were realised.

In this future, people, their families and their communities are recognised not as passive recipients of services but as active partners and co-producers of their own health and wellbeing. The expertise they carry – the parent who is the expert on their child, the carer who is the witness to the whole journey – is treated as equal to clinical expertise and, decisively, is acted upon. Partnership is not a survey returned or a consultation completed, but a genuine sharing of decisions in which something actually changes: resources move, priorities shift, and what matters to a community is implemented.

Power, in this future, has genuinely moved. Authority is relocated towards people and communities, and the direction of travel is reversed: systems make themselves visible and present within the fabric of communities rather than expecting people to navigate their way into institutions. Those who hold financial and policy control have learned to let some of it go, and care itself is treated as a collective responsibility and a political priority – no longer an inexhaustible resource drawn disproportionately from women and families.

The conditions for relational work are in place. Leadership expects and protects the time that partnership requires; culture treats it as everyone’s work rather than the task of a specialist team; and partnership is woven into the routines of everyday practice, so that families are inside the huddle and their knowledge counts as evidence. Services reach into communities and address the wider determinants of health, working with the assets that already exist – the networks, the carers’ groups, the faith and community organisations – rather than cataloguing deficits. The professionals who deliver care do so as members of the communities they serve, no longer separated by institutional walls.

The measures by which success is judged capture what actually matters: whether people – those receiving care, those providing it informally, and the paid workforce – are genuinely better; whether they feel valued, included on their own terms, and part of an ongoing process of improvement. Partnership has become so embedded in policy and practice that it is given no second thought; it is simply the way things are. The examples that today feel exceptional – Frome, Nuka, Botermarkt, and the 22q11 clinic – have become the ordinary expectation rather than the inspiring exception.

This vision is utopian, but it is not unreachable. The Forum was clear that the will and intent already exist – in communities, in the voluntary and community sector, in social care, and increasingly in local and municipal government, which sit closest to the front line. The remaining barrier is the large, monolithic health system, with its walls between professionals and the people they serve. Change is visible precisely where those systems are breaking the walls down and moving out into community spaces. The challenge, as the panel made plain, is not one of imagination but of will: to do differently, in order to get something different – because, in the end, care is the foundation of everything.