PPIE explained - plain English
What is PPIE?
PPIE stands for Patient and Public Involvement and Engagement. It means involving patients, carers, and members of the public in shaping health research, NHS services, and healthcare decisions - rather than treating them only as the recipients of care.
PPIE meaning: the short answer
PPIE (Patient and Public Involvement and Engagement) is the active participation of patients, carers, service users, and members of the public in decisions about health research and NHS services.
It is not the same as taking part in a clinical trial or filling in a satisfaction survey. PPIE means people with lived experience of illness, disability, or healthcare having a genuine role in shaping the research being done about them, the services designed for them, and the policies that affect them.
The term is used most in: NHS service design and redesign, academic health research (particularly NIHR-funded studies), pharmaceutical clinical trials, and healthtech product development.
PPI vs PPIE: what is the difference?
The two terms are closely related and often used interchangeably - but there is a distinction worth understanding
PPI - Patient and Public Involvement
PPI refers to active involvement in shaping research or services. Patients and the public are partners in the process - not just consulted, but genuinely influencing decisions.
PPI might mean a patient sitting on a research steering group, a carer reviewing a consent form to check it makes sense, or a community group co-designing a new clinic pathway.
NIHR defines PPI as "research being carried out with or by members of the public rather than to, about, or for them." That distinction - with or by, rather than to or about - is the heart of it.
PPIE - adding Engagement
Adding 'Engagement' broadens the definition to include activities that raise awareness, share information, or communicate with patients and the public - even when those activities do not directly involve them in decision-making.
Public engagement might mean presenting research findings to a community group, running an information session at a library, or sharing results in plain English with the people who took part in a study.
In practice, most NHS organisations and funders now use PPIE as the standard term to cover both the involvement (shaping decisions) and the engagement (communicating and informing) dimensions of the relationship with patients and the public.
The short version: PPI is involvement in decisions. Engagement is communication and awareness. PPIE covers both. If someone asks for your PPIE plan, they want to know how you will involve people and how you will engage them.
PPIE is also easy to confuse with two other terms that get used in health and care: patient engagement and patient experience. We untangle all three, and explain why the distinction matters to funders and reviewers, in our guide to PPIE vs patient engagement vs patient experience.
Where PPIE applies
PPIE shows up across health and care - in different contexts, with slightly different expectations
PPIE in NHS services
NHS organisations have a legal duty to involve patients and the public in decisions about services. This ranges from patient participation groups (PPGs) in GP practices to formal public consultation on major service changes. CQC inspectors assess the quality of patient involvement as part of their inspections.
PPIE in health research
NIHR requires PPIE in almost all funded research. Patients and the public can be involved in setting research priorities, designing studies, interpreting findings, and disseminating results. Strong PPIE is increasingly a factor in whether grants are funded. INVOLVE (now NIHR's Centre for Engagement and Dissemination) provides the national framework.
PPIE in clinical trials
Pharmaceutical companies and academic research teams involve patients in trial design, endpoint selection, and patient-reported outcome measures (PROMs). Regulatory bodies including the EMA and MHRA increasingly expect evidence of patient involvement. Patient advisory groups shape protocols, consent forms, and dissemination strategies.
PPIE in healthtech and digital health
Digital health companies building patient-facing apps, clinical decision support tools, and remote monitoring platforms involve patients and clinicians in design and testing. For products seeking NHS adoption, evidence of PPIE strengthens procurement cases. It overlaps with UX research and usability testing in this context.
PPIE in primary care
PCNs (Primary Care Networks) and GP practices use PPIE to understand the needs of their registered populations, involve patients in service changes, and demonstrate community engagement to commissioners. Patient participation groups are the most established form, but effective PPIE goes further - reaching people who would not typically self-select for a PPG.
PPIE in social care and public sector
Local authorities, housing associations, and social care providers involve communities in commissioning decisions, service design, and policy development. The language sometimes shifts - "co-production", "community engagement", "resident involvement" - but the principle is the same: the people affected should have a meaningful say.
What good PPIE looks like - and what it does not
The difference between meaningful involvement and box-ticking
What good PPIE looks like
Involvement from the start. Not brought in at the end to validate decisions already made. People with lived experience help frame the questions, not just comment on the answers.
Representative and reaching the right people. Not just the most vocal or most available. Actively recruiting people whose experience is most relevant - including groups who are typically underrepresented.
Genuine influence. Involvement that demonstrably changes something - a research question reframed, an outcome measure added, a service redesigned. Not a tick-box for a grant application.
Properly resourced. People are paid fairly for their time and expertise. Sessions are accessible. Materials are in plain English. Logistics work for them, not just for the organisation.
Clearly reported. What involvement took place, who was involved, what they said, and what changed as a result. Funders and ethics boards can tell the difference between a genuine report and a paragraph of vague claims.
What PPIE is not
Not a survey at the end. Asking patients how they found a service after it launched is feedback or evaluation - not PPIE. Involvement shapes design, not just measures outcomes.
Not a rubber stamp. Presenting a plan to patients and asking them to approve it is consultation at best. PPIE means their input had a real chance to change something.
Not the same as patient participation. A patient who takes part in a clinical trial is a research participant. A patient who helped design that trial is involved in PPIE. Both matter - they are just different things.
Not tokenistic diversity. Having one patient representative on a committee of twenty clinicians who meet at 9am on a Tuesday may technically count. It does not constitute meaningful involvement.
Not optional in funded research. NIHR-funded studies are required to demonstrate PPIE. Ethics committees expect it. Grant reviewers assess it. Treating it as a formality tends to show.
Forms of PPIE: how involvement actually happens
PPIE is not one thing - it takes different forms depending on what is being shaped and what stage things are at
Patient advisory groups and panels
A standing group of people with relevant lived experience who provide ongoing input into a research programme, service, or organisation. Typically meets quarterly or more frequently. Members may be paid as contributors. Common in pharmaceutical research, NHS trusts, and academic research teams.
Co-design workshops
Facilitated sessions where patients, service users, or community members work alongside professionals to design or redesign a service, tool, or research approach. The output is shaped by the group, not presented to them.
Interviews and focus groups
Qualitative research with people with lived experience to understand their perspectives, needs, and priorities. Used in the early stages of research design or service development to make sure the right questions are being asked.
Document and materials review
Patients reviewing participant information sheets, consent forms, questionnaires, and plain English summaries to check they are understandable, appropriate, and not inadvertently distressing or confusing.
Community consultation
Reaching into communities to understand needs, priorities, and views - especially communities who are underrepresented in standard PPIE. This might involve community partners, voluntary sector organisations, faith groups, or peer researchers from within the community.
Surveys and questionnaires
Used to gather broader input from larger numbers of people - quantifying priorities, testing assumptions, or capturing views at scale. Surveys are more engagement than involvement, but are a legitimate part of a mixed PPIE approach.
Patient representatives on governance bodies
Patients, carers, or community members sitting on trial steering committees, research ethics groups, trust boards, or service design teams as equal participants - not observers. Requires proper support, induction, and accessible documentation.
Lay summaries and public-facing outputs
Translating research findings, service changes, or policy decisions into plain English and sharing them with the communities who were involved. This is the engagement side of PPIE - closing the loop rather than just extracting input.
Common questions about PPIE
Answers to the questions people most often ask about PPI and PPIE
What does PPIE stand for?
PPIE stands for Patient and Public Involvement and Engagement. It is the term used in UK health research and the NHS for the meaningful involvement of patients, carers, and members of the public in shaping healthcare decisions, research, and services.
What is the difference between PPI and PPIE?
PPI (Patient and Public Involvement) focuses on active participation in shaping decisions - having real influence on research questions, study design, or service development. PPIE adds 'Engagement' to include broader communication and awareness activities, such as sharing research findings with communities or running public information events. In practice, the terms are often used interchangeably, and both appear in NHS and NIHR documentation. If someone asks for a PPIE plan, they typically want to see both involvement and engagement addressed.
What is PPIE in healthcare?
In healthcare, PPIE is the practice of involving patients, carers, and the public as active contributors to decisions about services, research, and policy - rather than making decisions about them without them. NHS organisations have a statutory duty to involve patients and the public. Good PPIE is also a quality marker that CQC inspectors and commissioners look for.
What is PPIE in nursing?
In nursing and allied health, PPIE refers to involving patients and service users in nursing research, curriculum development, and service improvement. This might mean patients contributing to nursing training programmes, service users sitting on research ethics groups, or carers helping to design new care pathways. The NMC and professional bodies recognise patient involvement as part of person-centred care.
Is PPIE required for NIHR funding?
Yes. NIHR (the National Institute for Health and Care Research) requires PPIE in the vast majority of funded research. Grant applications ask how patients and the public have been involved in developing the application and how they will be involved throughout the study. NIHR's Centre for Engagement and Dissemination (which incorporates the former INVOLVE group) provides guidance and standards for good PPIE in research. See our full guide to NIHR patient involvement requirements for what counts as good PPI for grant applications and ethics submissions.
What is a lay member in PPIE?
A lay member is someone involved in PPIE who is not a healthcare professional or researcher - typically a patient, carer, or member of the public with lived experience relevant to the research or service in question. Lay members sit on trial steering committees, NHS boards, research ethics groups, and advisory panels. The term distinguishes people with lived experience from professional or clinical contributors.
Should PPIE contributors be paid?
Yes, in most contexts. NIHR guidance and NHS England both state that people should be fairly reimbursed for their time and expenses when contributing to PPIE. Payment recognises the value of lived experience expertise and removes barriers to participation for people who cannot afford to give their time for free. NIHR provides suggested payment rates. Voluntary contribution may be appropriate in some community engagement contexts, but should not be the default in funded research.
How do you demonstrate PPIE to an ethics committee?
Ethics committees expect to see: who was involved, how they were recruited, at what stage they were involved, what they contributed, and what changed as a result. A strong PPIE submission is specific - it names the activities, describes the people involved (without identifying them), and shows how their input shaped the research. Vague statements about "consulting with patients" are generally insufficient. A PPIE log or impact statement is good practice.
Need PPIE for a project?
Participation Studio delivers PPIE for NHS trusts, primary care networks, academic researchers, pharmaceutical companies, and healthtech teams. We design and run involvement programmes that meet NIHR, ethics, and commissioning standards - and that involve people in a way that actually makes a difference to the research or service.
Whether you need a patient advisory group, community consultation, co-design workshops, or help building a PPIE strategy from scratch, we can help.
We fully recognise the effort your team invested in recruitment, moderation, and analysis, and we genuinely appreciate the quality of the discussions and reporting.
- Usability problems in an insulin device surfaced before manufacturing locked anything in, with human factors evidence supporting the regulatory submission.
- An NHS patient portal team got a prioritised, evidenced list of adoption barriers, and the highest-leverage fix wasn't the one they expected.
- Patient involvement changed a trial's primary endpoint before the protocol was finalised, cited by the ethics committee as a model for evidencing PPIE.
Trusted PPI and PPIE delivery partner to the NIHR HealthTech Research Centre in Accelerated Surgical Care.
Questions about PPIE for your project?
We are happy to talk through what good PPIE looks like for your specific context - whether that is an NHS bid, a research grant, or a healthtech product.
Get in touchWe usually respond within one working day.
Prefer to talk it through first?
Book a free 20-minute call. No obligation, no sales pitch. We'll tell you honestly whether research is worth it for your decision, and what it would cost.