How to co-design innovation
with the people who need it most   

Innovation only succeeds when it reflects real life. Co-design is how we close the gap between clinical systems and the people they are meant to serve.  

So what happens when we co-design services with the people who need them — not just for them? The health system is, justifiably, focussed on improving the process of care to achieve efficiency and clinical outcomes. But as an NHS literature review points out, a “good process does not necessarily provide a good experience for people, their families or staff”. 

Co-design is also one of the most powerful ways to reduce health inequalities by ensuring solutions are shaped by people whose needs are often overlooked or misunderstood. Co-design bridges that gap. It ensures Quality Improvement (QI) initiatives are about addressing the subjective experience of receiving and delivering care, as well as meeting objective targets.  

When we get co-design right, the potential to improve outcomes at scale is enormous. Opportunity areas include:
 

•  Persistent health inequalities and access disparities

  When we co-create solutions with affected patient communities to address real-world barriers (e.g., trust, literacy, transport, cost), we make sure innovations are accessible and relevant – and we avoid top-down solutions that widen existing disparities.
   

• High cost, low value service provision

  Co-design shifts the focus from the system’s needs (e.g., bed availability) to the user’s reality (e.g., lack of clarity on discharge, medication, and follow-up care). This leads to solutions that remove system friction and make more efficient use of scarce resources.
   

• Complex and chronic care management

  
  For people living with long-term conditions, where sustained self-management and/or behaviour change are key, co-design results in practical, patient-centred tools.

 

So, what does co-design actually look like in practice?  

It’s a paradigm shift from traditional consultation models. It’s a genuine partnership where individuals with lived experience (patients, service users, carers) and those with learnt experience (frontline staff, clinicians) are equal partners in every stage of the innovation lifecycle — from defining the problem to developing, implementing, and evaluating the solution. 

The goal isn’t gathering feedback on a pre-existing idea, but to collaboratively define the need and solution from a shared perspective. This approach ensures that the innovation addresses the genuine pain points and realities of both service users and providers. 

FCC has seen the value of this approach across multiple programmes; our digital Care Adoption Readiness work, showed how lived experience shaped pathway design, workforce readiness and adoption planning. Our digital inclusion and remote care collaborations also brought together NHS, local government and VCSE partners to co-design solutions rooted in real user need. 

A study of new-onset Type 1 Diabetes interventions in Denmark and the UK, for example, shows how co-design allows for an integrated model of care addressing the psychological and social elements of the diagnosis. This resulted in the development of visual conversation tools to support social and psychological adaptation – moving beyond the technical skills of glucose management alone.
 

Lived experience: the non-negotiable component  

Lived Experience grounds innovation in authenticity and usability. It moves beyond simple focus groups or surveys, which often capture high-level metrics like satisfaction, but miss the critical nuances of daily life.

By engaging people with lived experience, innovators gain critical insight into: 

• The emotional and practical “touchpoints” of a care pathway. 

• The real-world barriers to adoption (e.g., lack of digital literacy, transport issues, fear). 

• Defining what success truly means from a human perspective, often prioritizing dignity and agency over purely clinical metrics. 

 

 

There’s a strong financial case for co-design 

Co-designed solutions generate high returns on investment because they address many of the causes of failed implementation. Solutions developed with co-design principles have a significantly higher chance of acceptance because the end-users already own the solution.

Co-designed evidence is also increasingly important for strategic commissioning. As ICBs deliver Population Health Improvement Plans, innovations that demonstrate lived experience, equity impact and usability will be better positioned for adoption and investment. This directly addresses the challenges of wasted resources on innovations that are ultimately abandoned due to poor fit. 

Integrating narrative evidence boosts the chances of success  

Successful co-production relies on valuing different forms of knowledge and evidence, specifically placing qualitative, narrative, and storytelling approaches as having equal value to traditional, quantitative evidence.

Innovators and evaluators must be equipped to capture and use these rich, narrative-based insights to justify scaling, as they explain the “why” behind adoption failure or success better than raw numbers alone. 

The NHS-developed Experience-Based Co-Design (EBCD) methodology is founded on this principle. By gathering and analysing detailed patient and staff narratives about their care experiences, the process identifiesshared emotional and practical priorities.  

This collaborative identification ensures the resulting change is perceived as necessary and relevant by all stakeholders, leading to seamless integration rather than disruptive imposition. 

The Point of Care Foundation outlines eight key stages of EBCD:  

1. Observation: Observing the service delivery area to understand what happens on a daily basis and identify key touchpoints (emotionally significant moments).
2. Interviews of Service Users: Conducting in-depth interviews with patients (service users) and their carers to capture their experiences and emotional journey.
   
3. Development of a Trigger Film: Creating a short, edited film using clips from the patient interviews to convey the service user’s experience in a powerful way.
   
4. Service Provider Feedback (Staff Event): Holding an event where staff are presented with the themes and “touchpoints” identified from the staff interviews and observations, and sometimes also showing them the trigger film. They identify areas they are happy to share with patients.
   
5. Service User Feedback (Patient Event): Holding a separate event where patients/carers watch the trigger film, discuss how the film reflects their experiences, and identify priority areas for improvement.
6. Joint Service User and Provider Feedback (Joint Event): Bringing staff and patients together to view the trigger film, share their perspectives, and agree on shared priorities for co-designing improvements.
7. Co-design Groups: Small mixed groups of staff and patients are formed to work collaboratively on the agreed-upon priorities, designing, testing, and implementing improvements using small tests of change.
8. Celebration Event: Holding a final event to report on the improvements implemented, celebrate the achievements of the co-design teams, and plan for sustaining the changes 

 

But while EBCD provides the essential foundation, senior decision-makers and evaluators rightly demand solutions that are not only experience-based, but also grounded in robust evidence. 

The most advanced co-design frameworks, such as Evidence-informed, Experience-based Co-design (E2CD), address the limitations of traditional EBCD to deliver true scalability by formalising two critical integrations: 

• Evidence and Experience as Equal Partners 

 Researchers act as equal partners to service users, providing rapid, focused syntheses of existing research evidence upon request to support co-design decisions. This ensures that the final solution is both clinically sound and user-centric, validating the investment case. 

• Empowering Users in Strategic Priority-Setting 

True power-sharing means giving service users authority over the strategic direction, not just the final product. 

E2CD includes an explicit priority-setting phase that grants people with lived experience a central decision-making role in defining what service area needs reform, ensuring efforts target the most impactful system-level problems and reducing the risk of “pilotitis.” 

By combining the practical steps of EBCD with the strategic rigor of E2CD, you demonstrate that co-design is the most robust, evidence-informed pathway to innovation and sustainable system transformation.

 

Co-designed solutions can win clinical leaders’ buy-in 

Co-design can be a powerful lever for mindset transformation among healthcare professionals and senior decision-makers. It transforms the professional’s role from “expert prescriber” (dictating change) to “expert listener” (facilitating change). This collaborative approach validates the immense, nuanced knowledge that frontline staff hold about daily operational reality. 

Because staff are involved in the design, the resulting innovations are structured to augment existing workflows rather than disrupt them. This is crucial for winning over clinical leaders (KOLs) who are justifiably protective of staff time, patient safety, and established clinical governance.  

But strong senior leadership is required. Leaders need to be open to rapidly translating co-production outputs into strategic decision-making. This means they must be willing to avoid unnecessary layers of bureaucracy that may hinder the translation of co-designed outputs into action. 

And at the frontline, it’s crucial to create a non-hierarchical structure and clearly define roles and responsibilities for all participants (staff and users) to ensure a genuine and equal partnership. This is what makes co-production feel safe and valuable.

Co-design is not a soft extra. It is a system-level strategy for sustainability, adoption and equitable impact. The innovations that succeed in the next decade will be those built with, not for, the people they serve. FCC can help you get there. If you need help to scale co-designed innovation responsibly and sustainably, contact Dr Lauren Evans at lauren@futurecarecapital.org.uk .