Health and care innovation is often framed around evidence, technology, markets and pathways. These all matter, but innovation only delivers real value when it reflects people’s lived realities, including their needs, choices, priorities, constraints, hopes and concerns.
That was the starting point for a recent workshop between NIHR Innovation Observatory and National Voices, who came together to explore how patient, public and community voice can be more meaningfully embedded in horizon scanning and foresight.
For both organisations, this is more than a useful collaboration. It is a strategic opportunity to shape how future health and care innovation is identified, understood and acted upon.
NIHR Innovation Observatory brings national horizon scanning capability, technical infrastructure, multi-source data and a policy-facing intelligence function. National Voices brings deep expertise in lived experience, community insight, and trusted relationships across more than 200 voluntary, community and social enterprise organisations.
Together, we see a clear opportunity: to move beyond a model of innovation intelligence that is primarily technical or quantitative, towards one that is also experience-led, equity-focused and grounded in implementation.
Building on strong foundations
At NIHR Innovation Observatory, public involvement and engagement is central to our mission and we are committed to provide data-driven insights that support innovation and equitable access to high-quality care. Through our established Public Advisory Group, ongoing community partnerships and proactive engagement with people with lived experience, we have been embedding broad perspectives into our horizon scanning and methods.
Recent work with Leaders Unlocked shows the value of this approach. Young people with neurodiverse experiences helped shape horizon scanning on digital technologies to support the wellbeing of children and young people with neurodevelopmental disorders, ensuring the work reflected real-world needs and priorities. View video here.
In our methods development, our child health innovation work, including the Hacking Child HealthTech 2025 report, reinforces this principle: innovation should be designed with children, young people and communities, not simply for them. View video here. Whilst our RIPPLES framework and toolkit is designed to help researchers carrying our rapid evidence synthesis to embed involvement in their work.
National Voices’ Vision for improving patient experience of diagnosis shows how lived experience can reveal what innovation and service improvement need to address in practice. Drawing on insights from people with lived experience and member organisations, the work highlights that diagnosis is not only a clinical process, but a wider journey shaped by access, communication, support, inequalities and follow-up care. Its nine proposals, supported by 58 health and care charities, include better support while waiting, clearer communication, stronger post-diagnosis planning, improved data on diagnostic inequalities, and ensuring new innovations embed health equity from the start.
More recently, National Voices’ work on medical devices prescribed outside hospital has demonstrated why patient insight must sit alongside clinical effectiveness and cost. The research found that people judge devices by their impact on daily life: comfort, fit, discretion, information, choice and confidence all shape whether a device truly works for the person using.
These examples point in the same direction. The future of innovation cannot be shaped by supply, science and system priorities alone. It must also be shaped by the people and communities’ innovation is intended to serve.
What we heard in the workshop
The workshop surfaced a strong shared ambition: to develop practical, scalable ways of embedding lived experience into horizon scanning, while recognising the realities of time, capacity, ethics, resources and commissioning cycles.
One important theme was that patient voice often enters the system through today’s problems: what is going wrong now, where access is unequal, where people feel unheard, or where services are failing to meet need. Horizon scanning asks a different but connected question: what is coming next, and how should we prepare?
Bringing those two perspectives together is powerful. It allows us to ask not only “what innovations are emerging?” but also:
- What unmet needs should innovation be responding to?
- Who is most likely to benefit, and who might be left behind?
- What would make this innovation acceptable, usable and trusted?
- What needs to be true in real pathways, communities and services for it to work?
- How do we spot demand signals from people and communities, not only from the system?
The workshop also challenged us to avoid treating involvement as a single ideal model. Not every horizon scanning project needs full co-production; not every question can be answered through the same method. The task is to develop a spectrum of involvement that is purposeful, proportionate and transparent. Sometimes the right approach may be rapid insight from existing VCSE data. Sometimes it may be a workshop with people with lived experience, carers, clinicians and researchers. Sometimes it may require deeper partnership with communities who are often excluded from traditional research and engagement routes.
If involvement is to become business as usual, it must be both principled and practical. It must be rigorous enough to influence decisions, flexible enough to respond to different questions, and sustainable enough to avoid overburdening communities.
A shared model for the future
The workshop pointed towards several priorities for the next phase of partnership.
First, we need a repeatable model for when and how patient, public and community involvement should be used in horizon scanning. This could include a shared decision tool to guide when engagement is needed, who should be involved, what methods are appropriate, and how to manage issues such as ethics, accessibility, payment, feedback and time constraints.
Second, we need stronger routes for “demand signalling” from communities and the VCSE sector. National Voices’ member organisations hold rich intelligence about what people are experiencing, what they need, and where current models of care are falling short. Linking that insight with NIHR Innovation Observatory’s horizon scanning capability could help identify not only what is technologically emerging, but what is socially and practically needed.
Third, we need rapid-access mechanisms that allow relevant voices to be brought into time-sensitive work without compromising quality or trust. Horizon scanning often operates to tight deadlines. The answer cannot be to leave lived experience out. It must be to build preparedness, shared infrastructure and trusted routes for engagement before urgent requests arrive.
Fourth, we need clearer feedback loops. People and communities should be able to see how their input has shaped priorities, outputs and decisions. Without this, engagement risks becoming extractive. With it, participation becomes part of an ongoing relationship of trust.
Finally, we need to track impact. Success should not be measured only by the number of workshops held or people involved. It should be measured by whether insight changes what is prioritised, how innovations are assessed, how equity is considered, and how future health and care decisions are made.
Setting new standards for involvement in horizon scanning
The opportunity here is not simply to improve individual projects. It is to help set a new standard for inclusive horizon scanning in health and care.
A recent international review on public, patient, community involvement and engagement carried out by the Innovation Observatory found, there are still relatively few published examples of patient and public involvement in horizon scanning, and where examples do exist, reporting is often unclear about who was involved, how they were supported, and where their input influenced decisions. This presents a clear opportunity for our partnership that could lead the way in embedding a business as usual model for public voice in horizon scanning.
Our shared ambition is that, patient, public and community insight is routinely treated as a core source of intelligence in horizon scanning. We want horizon scanning to be better understood across the VCSE sector and lived experience to be better embedded across the innovation ecosystem. We want to develop methods that are credible, scalable and useful beyond our two organisations.
To achieve this, we will need more than goodwill. It will require infrastructure, shared language, resources, challenge, humility and persistence. It will require us to bring together different kinds of expertise: data science and lived experience, foresight and community insight, policy intelligence and practical knowledge of what it means to live with a condition, use a device, navigate a service, or be excluded from care.
But the prize is significant. By working together, NIHR Innovation Observatory and National Voices can help ensure that the future of health and care innovation is not only more advanced, but more inclusive, more responsive and more human.
Jacob Lant, CEO, National Voices
Professor Jane McDermott, NIHR Innovation Observatory
