Exploring the transformative power of patient and carer involvement in healthcare design and delivery
Imagine facing a devastating cancer diagnosis, only to find treatment information filled with impenetrable medical jargon. Or consider the elderly couple navigating a maze of discharge procedures after a hospital stay, feeling invisible and unheard. These scenarios represent more than just personal struggles—they reveal a fundamental gap between healthcare delivery and the people it serves.
In the midst of an unprecedented crisis, with public satisfaction with the NHS at a record low of 21% and public trust in the health service has deteriorated to unprecedented levels 1 , a quiet revolution is transforming how healthcare is designed and delivered.
This revolution centers on consumer representation—the active involvement of patients, carers, and community members in shaping health research and services. It's a movement that recognizes those with lived experience of health issues possess unique expertise that can make healthcare more responsive, effective, and equitable.
As the NHS grapples with emergency care delays where only 73.4% of patients are seen within the four-hour target 1 and a growing ageing population with complex needs, the push for genuine consumer involvement has never been more urgent.
In healthcare contexts, 'consumers' refers to a broad group including patients, carers, family members, and representatives from consumer organizations. The term encompasses anyone with lived experience of health issues, either directly or through supporting others 3 8 .
Consumer representation moves beyond simply using people as research subjects to actively involving them as partners throughout the healthcare journey.
Paternalistic approach with passive patients
Limited patient feedback mechanisms
Active partnership and co-design
The case for consumer representation extends beyond moral arguments about patient rights to demonstrate tangible benefits. Research-active hospitals consistently demonstrate better health outcomes, including lower mortality rates, and patients report higher satisfaction with their care experience in these environments 2 .
Increased job satisfaction and improved recruitment and retention when enabled to involve consumers in their work 2
More relevant research, better dissemination of findings, and more cost-effective services through reduced inefficiencies 7
Perhaps most compellingly, consumer representation helps address the dangerous mismatch between the research that gets done and the research that patients actually need and want 7 .
Multiple studies have demonstrated both the value and challenges of consumer representation in healthcare. A comprehensive scoping review published in 2025 identified six key themes for successful consumer engagement, emphasizing the importance of reciprocal learning, supportive environments, and training to build capacity 8 .
Based on scoping review of successful engagement factors 8
The review highlighted that while the motivation for consumer engagement exists, researchers often face constraints including limited time, inadequate resources, and insufficient institutional frameworks to support meaningful partnerships 8 .
"Researchers who had worked with consumers reported they helped refine research questions, improve patient information materials, and make trials more relevant to patient needs."
Earlier research from a 2001 UK survey of clinical trial coordinating centres found that while consumer involvement was growing and generally welcomed by researchers, implementation remained uneven 7 . Of the 62 centres surveyed, only 23 reported already involving consumers in their work, though most recognized its value.
While the principle of consumer involvement gained traction in the early 2000s, there was little agreement on what constituted successful engagement. Without clear standards, efforts risked being tokenistic or ineffective. To address this gap, a landmark study set out to develop consensus on the principles and indicators of successful consumer involvement in NHS research 3 .
The research team employed rigorous consensus methods, beginning with an expert workshop using the Nominal Group Technique—a structured approach for generating ideas in areas where research evidence is limited. The workshop included both researchers and consumers with experience in consumer involvement, ensuring both perspectives shaped the emerging principles 3 .
13 participants (6 researchers, 7 consumers)
Nominal Group Technique with 85% agreement threshold
96 participants with consumer involvement experience
Rating principles on clarity and validity
8 validated principles with measurable indicators
Two-stage consensus development process 3
The study achieved consensus on eight clear and valid principles for successful consumer involvement in NHS research, each with measurable indicators 3 . These principles have since become a foundation for consumer involvement practice across the NHS.
| Principle | Core Concept | Example Indicator |
|---|---|---|
| A | The research leads to benefits for consumers, identified by consumers themselves | Consumers report perceived benefits from the research |
| B | Consumers are involved in every appropriate stage of research | Evidence of consumer input from research question to dissemination |
| C | Researchers respect the differing skills and knowledge of consumers | Terms of reference for the research group acknowledge different forms of expertise |
| D | Consumer roles are agreed between researchers and consumers | Written terms of reference exist for consumer involvement |
| E | Consumers can opt out of involvement at any time | Procedures exist for voluntary withdrawal |
| F | Consumer involvement is described in research reports | Funding applications and reports describe consumer involvement |
| G | Resources are allocated for consumer involvement | Budget includes costs for consumer involvement |
| H | Consumers are offered training and support | Training is provided appropriate to consumer needs |
The implications of this research extended far beyond academic interest. For the first time, commissioners, researchers, and consumers had validated guidance to distinguish genuine partnership from tokenistic inclusion. The principles emphasized that successful involvement requires more than good intentions—it needs dedicated resources, mutual respect, and clear roles.
Engaging consumers effectively requires both conceptual frameworks and practical tools. The 2025 scoping review synthesized evidence-based resources into an overarching framework with six key components 8 . Meanwhile, NHS England's Transformation Directorate provides practical guidance for incorporating consumer representation throughout the project lifecycle 4 .
The digital service design approach used by NHS England emphasizes different forms of engagement at different stages 4 :
| Resource Type | Purpose | Key Features |
|---|---|---|
| Engagement Framework | Guide overall approach to partnership | Reciprocal learning, supportive environments, training 8 |
| Project Stage Guidelines | Ensure appropriate involvement at each phase | Strategies for discovery, alpha, beta, live phases 4 |
| Training Programs | Build capacity for consumers and researchers | Research process, communication skills, expectations 3 |
| Evaluation Tools | Assess impact of consumer involvement | Measures process and outcomes against principles 3 8 |
User journey mapping
Co-creation workshops
Rollout planning
Continuous feedback
Transition planning
Continuous improvement
As the NHS moves forward, consumer representation is evolving in exciting new directions. The government's Life Sciences Sector Plan aims to dramatically increase clinical trial activity within the NHS, recognizing that research-active hospitals provide better care 2 .
This includes ambitious targets to slash clinical trial setup times and double commercial trial participants by 2026 2 .
Digital innovation offers particularly promising pathways for broader consumer engagement. The NHS is investing in "Hospital at Home" programmes and virtual wards that leverage technology to shift care from institutions to communities 5 .
Meanwhile, the push toward a single patient record and an NHS app that serves as the "front door" to all services by 2028 promises to give consumers unprecedented access to their health information and services 6 .
Virtual consultations and remote monitoring
Psychology-informed engagement strategies
Centralized access to services and information
Shifting care from institutions to communities
Emerging approaches incorporate behavioral science to design more effective engagement strategies. By understanding the psychological factors that influence health decisions, researchers and service designers can create interventions that better align with how people actually think and behave 5 .
Using data analytics and machine learning to adapt to individual behavioral patterns and preferences.
Helping consumers embrace active roles in their healthcare through psychological empowerment.
Designing systems that make healthier decisions and more engaged participation the default option.
These approaches recognize that effective consumer representation requires both systemic support and attention to individual psychology, creating healthcare experiences that are both scientifically sound and human-centered.
The transformation of the NHS from a traditionally paternalistic system to one that genuinely partners with consumers is neither simple nor complete. Significant challenges remain, including tokenistic involvement that checks boxes without ceding real influence, inadequate resources dedicated to meaningful engagement, and persistent structural barriers that prioritize professional expertise over lived experience 1 7 8 .
Yet the direction of travel is clear. As one researcher involved in the landmark consensus study observed, input from consumers helped "refine research questions, improve the quality of patient information, and make the trial more relevant to the needs of patients" 7 .
"In an era of unprecedented challenges for the NHS, such improvements are not merely desirable—they're essential for creating a health service that remains true to its founding principles while meeting the complex needs of today's population."
Authentic partnership requires shared power, mutual respect, and sustained commitment from all stakeholders in the healthcare ecosystem.
The journey toward authentic consumer representation demands more than policy changes or methodological tools—it requires a fundamental shift in mindset. It asks healthcare professionals and researchers to recognize that expertise comes in many forms, and that those with lived experience of health conditions bring essential knowledge to the table. It challenges consumers to step into roles as active partners rather than passive recipients. And it reminds us all that in healthcare, perhaps the most vital prescription is to listen to the voices of those we seek to serve.
References will be populated separately as needed for the final publication.