Putting People at the Heart of Policy: Why Public Deliberation Matters in Health and Care

In a time of unprecedented transformation across health and care, public trust and transparency are more crucial than ever. But how do we ensure the voices of patients, staff, and communities are not just heard, but meaningfully influence the decisions shaping their care?

Starlight associate Amy Darlington, Director of Policy Partners, has spent her career answering that question. Through her work leading large-scale public deliberations, Amy has championed the power of participatory engagement in driving better, fairer, and more trusted policies.

In a recent conversation, she shared how she found herself working across health policy and public engagement, the challenges the sector still faces, and why meaningful deliberation is not just a luxury but a necessity.

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Amy’s background is firmly rooted in communications and engagement, with two decades spent in healthcare. But it was a call to support the One London programme in bringing together health data across the capital that marked a pivotal shift.

“They wanted to ensure decisions were shaped by public expectations,” Amy recalls. “Historically, engagement around health data had been poor. Programmes like care.data failed because people didn’t feel involved or informed.”

That experience led Amy to lead the One London Citizen Summit, which brought together 100 Londoners to deliberate over four days on how their health data should be used. Their detailed recommendations helped shape regional and national policy and became a recognised model of best practice.

“To see 100 people from all walks of life debating complex issues, and come out with something so considered and constructive, was deeply humbling,” she says. “That process showed what’s possible when we treat engagement as strategic, not tokenistic.”

The Surprising Struggle for Engagement

Despite such successes, Amy admits she still faces resistance.

“Even with a global track record showing the value of public involvement, I’m often still making the case for it to be seen as a strategic tool,” she says. “It’s sometimes dismissed as a ‘nice to have’, a luxury in financially tough times.”

But in Amy’s view, meaningful engagement is essential, particularly when organisations are undergoing significant change. “If we don’t do this well, we risk derailing the very changes we’re trying to implement.”

It’s not just about listening - it’s about leveraging the insights and trust that emerge from real dialogue.

Misunderstood Methods, Missed Opportunities

A major challenge, Amy notes, is the limited understanding of what deliberation actually is.

“People often think engagement means inviting a couple of patients to a board meeting or running a focus group,” she explains. “Those methods have their place, but they rarely provide the kind of insight needed to navigate complex policy trade-offs.”

Deliberation, by contrast, brings together a diverse ‘mini public’ - representative in age, background, and attitudes - to learn, debate, and weigh up competing priorities over multiple days. They’re presented with evidence, hear from experts, and are supported by facilitators to explore where red lines are, what conditions matter most, and what trade-offs are acceptable.

“This isn’t about asking people what they want and handing over a wish list,” Amy says. “It’s about helping decision-makers understand informed public expectations - what people can support if certain safeguards are in place.”

She gives the example of commercial access to health data. “Most people, if asked in a survey, say no to commercial access. But in deliberations, after learning about how this works, and being able to shape the rules, the position is far more nuanced: ‘I care about research happening. I’m nervous about commercial use, but let’s talk about what conditions would make that acceptable.’ That’s a much more useful conversation for decision-makers.”

Developing better policy

In an age of polarisation and declining trust, deliberation has a unique role to play.

“Good deliberation helps institutions build trust with their communities. It shows people that their voices shape outcomes, not just that they’ve been consulted,” Amy says.

It’s not without its hurdles. Deliberation takes time and resources. It demands open-minded leadership. And crucially, it requires decision-makers to genuinely want to involve people in decision making and policy formation. They need to put jeopardy on the table rather than simply seeking validation for decisions already made.

“But when done well,” Amy argues, “it can unlock decisions that would otherwise stall and help systems move faster and further with public backing.”

A Changing Landscape and an Urgent Need

With the NHS recently publishing its 10-year plan - filled with bold ambitions but with many decisions left open - Amy sees now as a critical moment.

“There are so many trade-offs inherent in the policies proposed in the 10-year plan, for example use of AI, genuinely delivering the prevention agenda and moving to a more integrated care model” she says. “These can’t be resolved through top-down planning alone. We need deliberation at the heart of implementation.”

She’s also concerned about proposed changes to public engagement structures, such as the phasing out of Healthwatch’s independence. “Those organisations played a vital role in surfacing underheard voices. If we’re losing that, we must find new ways to ensure those perspectives still inform decisions.”

Beyond Deliberation: Embedding Participation

While a passionate advocate, Amy is clear that deliberation isn’t the only answer.

“It’s great for complex, thorny issues, but not every decision needs a deliberative approach” she says. “We also need more participatory approaches embedded in day-to-day service design and local decision-making.”

As new models like Integrated Health Organisations (IHOs) emerge she sees an opportunity, but only if approached with care.

“IHOs should be about collaboration, not consolidation. If large trusts simply absorb others, that risks losing the very integration we need,” she warns. “We need governance that values every voice, organisationally and in the community.”

True systems leadership, she argues, means building from the ground up. Partnering with communities, not imposing decisions on them.

Recommended Listening and Reading

For those interested in learning more, Amy shares a few favourites. She’s a fan of The Rest is Politics podcast for its thoughtful take on democracy and the role of deliberation alongside Parenting Hell for a moment of reflection that resonates as a working mum. And for anyone looking to understand the potential of citizens to drive change, she recommends John Alexander’s book Citizen.

“It’s about the power communities have to lead from the bottom up and why that matters now more than ever.”

Final Thought: From Token to Transformative

As the health and care system enters a new phase of reform, Amy’s message is simple: put people at the centre, not the periphery.

“Public deliberation helps us make better decisions: more trusted, more effective, and more sustainable. But only if we invest in it, value it, and embed it from the start.”

It’s not about ticking boxes. It’s about shifting mindsets.

“When we genuinely treat people as partners in shaping their own services and systems, the results speak for themselves.”