PPIE vs Patient Engagement vs Patient Experience: What's the Difference?

Why these three terms keep getting mixed up

PPIE, patient engagement, and patient experience all put patients and the public somewhere near the centre of how health and care services work. They are often used by different teams within the same organisation, sometimes interchangeably, and the language overlaps enough that it is easy to assume they mean roughly the same thing.

They do not. Each term describes a different activity, answers a different question, and gets evidenced in a different way. A funder asking for evidence of PPIE will not be satisfied by a Friends and Family Test score, and a clinician trying to improve how they discuss treatment options with a patient does not need a lay representative on a research steering group. Knowing which one you actually need, and which one you are actually doing, matters more than it might first appear.

What PPIE actually is

PPIE stands for Patient and Public Involvement and Engagement. At its core, it means people with relevant lived experience helping to shape research, services, or policy as partners, not as subjects. A patient sitting on a research steering group, a public contributor reviewing a grant application, and a community advisory panel helping redesign a clinical pathway are all examples of PPIE. We cover this in more depth in our guide to what PPIE is.

The defining feature of PPIE is influence. Contributors are involved early enough, and meaningfully enough, that what they say can actually change the direction of the work. That is also why funders such as NIHR look for PPIE specifically: it is evidence that the research has been shaped with the people it is for, not just tested on them afterwards.

What patient engagement means

Patient engagement is a different thing again. It usually refers to the ongoing relationship between a patient and the services treating them: how clearly options are explained, how much say someone has in decisions about their own care, and how supported they feel to manage a condition or follow a treatment plan. Shared decision-making tools, health literacy materials, and patient portals are all part of patient engagement.

The key difference from PPIE is who the activity is for. Patient engagement is about an individual's relationship with their own care. PPIE is about people shaping research or services on behalf of others, including people they will never meet. A hospital can have excellent patient engagement on its wards and still have no PPIE in its research programme, and the reverse is just as possible.

What patient experience means

Patient experience is a measurement. It is what you get from the Friends and Family Test, complaints data, satisfaction surveys, and feedback forms: a record of how people felt about a service they have already used. It looks backward, at something that has already happened, and it is usually collected from a large number of people rather than a small group of partners.

Patient experience data can be a useful starting point for PPIE. A recurring theme in complaints or a pattern of low satisfaction scores might be exactly the prompt a project needs to bring affected patients in as partners to help understand and address it. But the data itself is not PPIE, and presenting a satisfaction survey as evidence of involvement will not stand up to scrutiny from a funder or reviewer who is looking for something else.

Where the three overlap, and where they diverge

The three are connected, but the connections run in specific directions. None of them is a substitute for either of the others.

Patient experience can prompt PPIE. A recurring theme in feedback or complaints is often the trigger for bringing affected patients in as partners to help understand and address it.

PPIE can improve patient engagement. Public contributors involved in designing a new patient information leaflet or consent process can directly improve how that service engages with the next patient who uses it.

None of them replace the others. A project can have strong patient experience data, genuine PPIE, and good patient engagement, and still be missing one of the three. Each needs its own plan, its own activity, and its own evidence.

Why getting the term right matters

For organisations applying for research funding, the distinction is not academic. NIHR and other funders score PPIE specifically, and reviewers can tell the difference between a description of involvement and a description of a patient survey. Submitting the wrong kind of evidence, or describing patient experience work as PPIE, weakens an application even when the underlying work is good.

Inside an organisation, the same confusion can mean PPIE and patient engagement sit with different teams who never talk to each other, even though their work could reinforce each other. Being precise about which term applies to which activity helps the right people own the right work, and helps everyone else understand what has actually been done.

How we help you do the right one

We run PPIE for research teams and NHS organisations, recruiting public contributors and patient partners who genuinely match the population a project is for, including people standard panels tend to miss. This covers everything from a single grant application to ongoing involvement across a research programme, through our PPIE and Patient and Public Involvement service and our PPIE for grant applications service.

We also run the kind of in-depth research that gets to genuine patient experience properly: interviews, contextual inquiry, and longitudinal studies that go beyond a survey score, through our in-depth user research service. All of it draws on The Collective, our paid panel of research participants from across the UK.