The Power of Patient and Public Involvement (PPI) in Healthcare Improvement

Published: 10 Sep 2025

How PPI Benefits the Wider Healthcare Landscape and Can Help Tackle Health Inequalities

By Kim Rezel, Head of Patient and Carer Engagement at HQIP, and Amy Wizard Ponter, HQIP SUN member

“Today, power in the health service could not be further away from its patients”, said The Rt Hon Wes Streeting MP, Health and Social Care Secretary, at NHS ConfedExpo in June 2025.

Patient and Public Involvement (PPI) is an essential component of healthcare improvement. It ensures that services are designed with the people who use them, not for them, with their voices being at the heart of decision-making.

The CORE20PLUS5 framework emphasises the importance of engaging patients, particularly those from under-represented groups, to drive meaningful change. By incorporating diverse perspectives, healthcare organisations can enhance transparency, inclusivity, and – ultimately – patient outcomes.

This article considers some of the multitude of benefits that effective PPI can bring, how to overcome potential barriers to engagement, and examples of real-world PPI in action.

The Transformative Power of Involving People with Lived Experience

Engaging people with lived experience in healthcare must never be a tick box exercise or after-thought. When done properly, with true co-production, it has huge benefits including:

  • Enhancing healthcare improvement by prioritising what matters to patients: Patients bring unique insights that clinicians and healthcare professionals may not consider, helping to shape more effective and patient-centred services. Understanding the priorities and concerns of those with lived experience helps produce and deliver services and resources that bring better outcomes for patients – ultimately, what we are all trying to achieve.
  • Including diverse perspectives and helping tackle health inequalities: Involving individuals from various backgrounds helps to understand diverse needs of individuals and communities. This is especially important when considering healthcare inequalities and hearing from those experiencing the worst health outcomes.
  • Strengthening transparency and inclusivity: A more collaborative approach fosters trust and accountability within the healthcare system, providing patients and carers with knowledge and understanding to empower them to be involved. This could be in their own care, the co-design of services for everyone, or the co-production of healthcare resources.
  • Learning and evolving: Service users bring not only their insights, but their wide-ranging skills too. These can be utilised in all aspects of service improvement.
  • Working together is better for staff too: Collaboration helps to boost morale and fosters effective working towards a common goal, with staff and patients alike thereby benefiting.

Addressing Healthcare Disparities through Proactive Engagement

Health inequalities remain a significant challenge within the NHS. Men living in the most deprived areas of England die almost 10 years earlier than those in the least deprived areas, while women face a gap of nearly 8 years.

The National Prostate Cancer Audit State of the Nation Report, published January 2025, highlighted how the percentage of men with high-risk/locally advanced cancer who received radical treatment showed a graded association between treatment and deprivation. Treatment rates decreased from 83.2% in the least deprived areas to 75.4% in the most deprived areas for men aged 60 to 69 years. For the period reported, black populations had more cases per 1,000 men than other ethnicities across all ages and stages at diagnosis. This was true in both ‘black or black British–African’ and ‘black or black British–Caribbean’ groups, with larger increases seen for the former group.

Such disparities highlight the urgent need for targeted engagement with communities experiencing the greatest health inequalities. Proactively engaging communities ensures that the voices of those most affected by disparities are heard. By working closely with local organisations, we can design interventions that directly address specific needs, helping to bridge the health equity gap. Aligning these efforts with NHS priorities, such as CORE20PLUS5, further strengthens the impact of such initiatives.

Overcoming Barriers to Effective PPI

While the benefits of PPI are clear, challenges can hinder meaningful engagement. Here are some common barriers and strategies to overcome them:

  • Time constraints: Collaborate with grassroots organisations, faith groups, and cultural spaces that have existing networks within the communities you wish to reach. These groups likely have established relationships and are keen to support dissemination efforts. Do keep in mind that these organisations often operate with limited funding, so consider offering financial support for their time and expertise, or other benefits, such as helping to elevate their work.
  • Leverage already existing data: Drawing on information that is already out there related to your project can help inform who and where to target and how to reach varied audiences to represent diverse voices.
  • Budget limitations: Start small and remember that delivering the right service from the outset can prevent wasted resources in the long-term. Financial incentives for involvement do have their place, but a ‘thank you’ payment must align with your organisational budget – being clear on the incentives that you can offer from the outset is key. Set out what being involved can mean for the patient, whether it’s learning and development, participating in change, and/or financial.
  • Champion the PPI voice: Effectively conveying the value of the input people have, such as demonstrating meaningful change or showing what they have directly impacted, can be a key driver for engagement.
  • Tap into what really matters: Consider your project priorities; if these are in line with what resonates with diverse people and communities, then they will want to be involved.
  • Use their work and input: Co-authorship, co-design and co-production! Showing the value of someone’s work and input is great for morale and shows that a difference is being made.
  • Public awareness: Utilise trusted spaces, such as GP surgeries, faith communities, community centres, and social media, to share information and engagement opportunities.
  • Cultural competency: Collaborate with local/community organisations to ensure staff are trained to engage with diverse communities in culturally sensitive ways.
  • Accessibility: Offer multiple engagement methods, including virtual sessions, in-person meetings, and arts-based approaches. Be flexible too – allow people different ways to be involved, giving them choice and control.
  • Offer additional benefits: Incentivise people by offering things like training, enabling them to add skills to their CV and giving them an extra reason to participate.
  • Encourage ideas and creativity: This galvanises people to be included and to see that their priorities are being taken seriously.
  • Disseminate effectively: Whether you wish to create knowledge about your project itself or get the word out that you are seeking to involve more people and communities, work with your public voices to create and use the best approaches to achieve multiple positive benefits and outcomes.
  • Equity and value: This is essential. Participation from patient advocates is just as important as participation from clinicians and healthcare professionals, so they must be treated as equals. This leads to longer-term loyalty and commitment, building of good working relationships and establishing trust.

“I’m an expert by experience, just like the rest of the table are experts in their field. My time and input are worth no less than theirs.” Meg, SUN member

PPI in action: Shaping improved outcomes

At HQIP, we have seen first-hand how PPI can improve outcomes.

Our National Clinical Audit and Patient Outcomes Programme (NCAPOP) projects undergo continuous improvements, with their outputs and outcomes enhanced through collaborating with, and listening to, their patient advocates.

Let’s look at some examples of excellent PPI that demonstrate how to drive inclusivity and widen the pool of those able and willing to contribute.

Epilepsy 12 National Audit

The Epilepsy 12 team collaborate with a group of Youth Advocates (YA), not only to hear their views of epilepsy care but also to empower them to contribute to the way the audit is run. Based on the YA engagement, the audit’s dataset evolved to include the monitoring of mental health, impact on education, and transition from children’s to adults’ epilepsy services – priorities raised by the YA and epilepsy charities that partner in the project.

Work is driven by the YA collective voice, which makes for better PPI, giving validity and merit to the ideas, innovations, and motivations of those getting involved in quality improvements.

A key aspect of the success of the group has been open and flexible engagement. YA have the control – they choose when and how they are involved. This actually encourages longer-term commitment, as the YA are not signed up for a set time period, reducing pressure on them.

The young people also mutually benefit, not only from their involvement and impact on actual change, but also by developing their confidence, leadership, and other skills. It is important to ensure benefits on both sides in any PPI – and if that can extend beyond the direct service improvement, it not only encourages existing participants to become further involved but also helps inspire other young people to join the work too.

One YA shared: “The impact for me has been seeing how it started off so small with a few clinics, to how well known it is now nationwide. We’re helping so many patients and families.”

National Confidential Inquiry into Suicide and Safety in Mental Health (NCISH)

The Mental Health Clinical Outcome Review Programme, delivered by the National Confidential Inquiry into Suicide and Safety in Mental Health (NCISH) and commissioned by HQIP, has been collecting information on suicides since 1996. Looking at the circumstances leading up to a person’s suicide, and any factors which may be related to management of the person’s care over decades, have led to important recommendations that make a difference to suicide rates through care improvements. Taking into consideration numerous findings from various primary and secondary care resources, they have created clinical standards based on real-world data.

NCISH work actively with PPI, truly establishing the views of many in all aspects of their vital work. They collaborate with the Mutual Support for Mental Health PPI group; people with personal experience of self-harm, suicidal behaviour, or mental illness, or of caring for people with such experiences. This collaboration enables NCISH to inform recommendations through PPI input, develop new areas of work based on service user priorities, and make care safer through developing research. PPI also guides them when creating resources, and when considering communication approaches and how to disseminate outputs most effectively.

Some of the changes they have implemented are shown in this image:

Listening to marginalised voices in maternity

In an HQIP project commissioned by NHS England to inform the development of an inclusive Patient-Reported Experience Measure for maternity care, we engaged with seldom heard communities about their experiences.

Rather than repeating engagement processes that had already been conducted, we leveraged existing research and spoke to organisations who had already connected with affected communities. Collaborating with community networks and organisations is an important step to learning and building relationships. It eases pressure on your resources, saves funding, and promotes smaller organisations. Yet, it is also an excellent way to truly find the information and data that you need with those who may be more ‘on the ground’ than you are able to be.

Find out more about how this approach uncovered fresh insights and the impact the project had in this case study.

Final reflections

True healthcare improvement requires the voices of those who experience the system first-hand. PPI is not just a policy requirement or a ‘nice to have’ – it is a powerful tool for designing services that are truly patient-centred. It is at the core of driving meaningful change; it is both an expectation and need across all healthcare.

There are a multitude of ways to utilise PPI so that it is beneficial for all, staff and patients alike. By actively engaging with all communities, overcoming any barriers and working collaboratively, we can ensure that healthcare services are equitable, effective and aligned with the needs of the people they serve. With the challenges the NHS currently faces and a widely understood need for transformation and improvement, as articulated by the NHS 10 Year Plan for England, meaningful patient and public engagement has perhaps never been more essential.

With thanks to Amy Wizard Ponter, HQIP SUN member, for co-authoring this article.

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