NIHR · Research PPIE · Grant compliance
What NIHR requires for patient and public involvement in funded research, what counts as good PPI for grant applications and ethics submissions, and how to build a PPIE programme that satisfies reviewers and genuinely involves the right people.
NIHR does not mandate a specific format for PPI. It mandates meaningful involvement: patients and the public genuinely shaping the research, not being consulted after the design is complete. The Centre for Engagement and Dissemination (which incorporates the former INVOLVE group) sets the standards and provides guidance for what good looks like across the different NIHR programmes.
Grant applications are expected to demonstrate involvement in the development of the application itself: who was involved, what they contributed, and what changed as a result. The PPI plan for the study then describes how involvement will be structured throughout: who will sit on advisory groups and steering committees, how lay members will be recruited and supported, and how contributors will be paid.
Reviewers assess the quality of proposed PPI as part of scoring applications. Studies that offer token or retrofitted involvement are penalised; studies that demonstrate genuine co-ownership of the research question tend to score better.
NIHR's involvement standards apply across all funded research, though the specific requirements vary by programme and funding stream.
Patients and the public should be involved in developing the grant application, not just named as future advisory group members. This means PPI contributors helping to frame the research question, reviewing the study design, checking that the research addresses what matters to people with the condition or experience in question, and confirming that the proposed involvement plan is realistic and appropriate. The application should describe specifically who was involved and what they contributed.
NIHR applications typically require lay contributors to be named and briefly described. These are the people with lived experience who have been involved in developing the application and who will continue to contribute to the study. They are not researchers, but they are co-contributors: their role is recognised, resourced, and reported alongside the research team.
The budget must include PPI costs: payment for contributors at NIHR recommended rates, travel and expenses, accessible venue hire if needed, and administrative support for involvement activities. Studies that propose robust PPI without budgeting for it are not credible. Reviewers check that the proposed activities are costed appropriately.
Most NIHR-funded studies require a Trial Steering Committee (TSC) or Project Advisory Group with lay membership. Lay members on these groups are expected to be genuine participants, not figureheads: they receive the same papers as other members, are supported to participate fully, and have an equal voice in decisions about the research. Accessible formats and pre-meeting briefings help make this work in practice.
PPI does not end when data collection is complete. NIHR expects contributors to be involved in interpreting findings (co-analysis sessions, lay review of emerging themes), in shaping how results are communicated, and in producing plain English summaries for participants and the public. This closes the loop between what was promised at application stage and what was delivered.
Annual progress reports and final reports include a PPI section. Studies must document what involvement activities took place, who was involved, what contributors said, and what changed as a result. Generic claims ("we involved patients in the study") are inadequate. The impact of PPI (how it shaped the research) is the evidence that NIHR actually requires.
The PPI section is assessed by reviewers. These are the elements that distinguish a strong submission from a weak one.
Characterise contributors without naming them.
Describe the people with lived experience who contributed to the application: the condition or situation they have experience of, roughly how many people were involved, and how they were recruited. You do not name individuals at application stage, but you characterise them enough that reviewers can assess whether the right people were involved for this study.
Specific activities, not vague statements.
Name the activities: reviewed the research question and confirmed its relevance, checked the participant information sheet, attended a design workshop to review study methods, provided input on outcome measures. The more specific, the more credible. "We consulted with patients" is insufficient; "two people with lived experience of long-term depression attended a two-hour protocol review session" is the kind of detail that satisfies reviewers.
This is the impact section that reviewers look for.
What did PPI contributors say, and what changed in the study design as a result? A primary endpoint was added because contributors identified it as more meaningful to patients. The consent form was rewritten after contributors found the original too clinical. The follow-up period was shortened because contributors said 12 months was too long for people with the condition. Concrete changes demonstrate genuine influence.
Who, how, and when throughout the study.
Describe the involvement structures for the duration of the study: advisory group composition and meeting schedule, lay member roles on the TSC, materials review processes, co-analysis activities, dissemination involvement. The plan should be proportionate to the study scope and realistically resourced. A four-year study needs a four-year involvement plan, not a one-paragraph statement of intent.
Beyond NIHR research, NHS organisations have statutory duties and policy expectations around patient and public involvement that shape how services are designed and commissioned.
NHS England's approach to co-production positions patients, carers, and communities as equal partners in designing and improving services, not just recipients of decisions made by professionals. The framework is built on the principles of equality, inclusion, partnership, and reciprocity, and is embedded in the statutory guidance for Integrated Care Boards.
Co-production in the NHS context means communities and services working together from the identification of problems through to the development and evaluation of solutions. It is not the same as consultation (asking communities for views on decisions already made) and not the same as engagement (communicating with communities about what services are doing). It is genuine joint working.
ICBs have a statutory duty under the Health and Care Act 2022 to involve patients and the public in planning and developing services. The quality of involvement is assessed through NHS system oversight and CQC inspection.
For NHS trusts and ICBs, co-production means: identifying the communities most affected by a service change, engaging them early (not after plans are drawn up), involving them in problem diagnosis as well as solution design, sharing power over the process rather than just inviting input, and documenting what was changed as a result of community involvement.
In practice this requires skilled facilitation, genuine commitment from senior leadership, accessible processes for communities (not just formal meetings), and a willingness to be changed by what communities say. It takes longer than consultation and produces better outcomes.
Organisations that have invested in authentic co-production tend to see fewer complaints, stronger community trust, and services that are actually used. The evidence base for co-production improving outcomes in health and care is growing steadily.
The most common problems that lead to PPIE not meeting NIHR or ethics standards.
The most common problem: a study design is finalised by the research team, then presented to PPI contributors for comment. At that point, meaningful change is difficult and unlikely to happen. NIHR reviewers can identify retrofitted PPI from the application: the contribution described does not seem to have shaped anything fundamental. Involvement must begin before the design is set if it is to be credible and genuinely useful.
PPI advisory groups dominated by people who are already experienced in research processes, articulate in professional settings, and have the time and circumstances to give voluntarily: these groups rarely represent the full range of people the research is about. Reaching people with direct lived experience of the specific condition, circumstance, or community the study is investigating often requires active recruitment effort, not an invitation to a standing panel.
Payment for PPI is NIHR policy, not a nice-to-have. Studies that rely on voluntary contribution exclude people who cannot afford to give their time for free and create implicit hierarchies about whose knowledge is worth paying for. PPI costs should be included in grant budgets from the start, at NIHR recommended rates. Failure to budget for PPI adequately is a marker of how seriously a team takes its involvement commitment.
Studies that cannot describe what changed as a result of PPI have either not involved people genuinely, or have not tracked the process carefully enough to evidence it. Keeping a PPI log throughout the study, recording what was discussed, what contributors said, and what was changed or decided as a result, makes the final reporting straightforward and provides the evidence that annual reports and ethics submissions require.
Advisory group papers written in academic language, meetings held at times and in formats that exclude certain groups, consent forms that patients cannot understand without help: all of these signal that the research process was designed by and for professionals, with involvement added around the edges. PPI contributors should be supported to participate fully, which means accessible materials, pre-meeting briefings where needed, and flexible formats that work for people with different access needs and schedules.
Research teams that do PPI because it is required for funding, rather than because it produces better research, tend to do it poorly. The studies with the strongest PPI are typically those where the research team genuinely believes that people with lived experience can improve the quality of the work. That orientation comes through in how PPI is designed, resourced, and reported, and it is what NIHR reviewers are looking for when they assess applications.
Yes. NIHR expects evidence of meaningful PPI in the vast majority of funded research. Grant applications require applicants to describe how patients and the public have been involved in developing the application and how they will be involved throughout the study. Reviewers assess the quality of proposed PPI as part of funding decisions.
Good PPI for a grant application includes: involvement in developing the research question before the design was finalised; contributors who are characterised specifically (not just referenced vaguely); a clear account of what they contributed and what changed; a realistic, costed PPI plan for the duration of the study; and payment at NIHR recommended rates. The quality marker is whether the PPI could plausibly have influenced the study design, not whether it is mentioned.
INVOLVE was the national advisory group that supported public involvement in NHS, public health, and social care research. It has been incorporated into NIHR's Centre for Engagement and Dissemination, which now provides the national framework and resources for research involvement. The standards and guidance that researchers cite as "INVOLVE guidance" are now maintained and developed by NIHR's CED.
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. They also look specifically at whether participants reviewed and approved the consent forms and participant information sheets. A strong submission is specific, evidenced, and shows that PPI shaped the research design, not just the communications materials.
NIHR recommends payment for PPI contributors' time (typically £27.50-£30 per hour for standard involvement activities), with all expenses reimbursed. Payment must be budgeted in grant applications. NIHR provides a payment framework; the key principle is that lived experience expertise is worth paying for, and that unpaid involvement excludes people who cannot afford to give their time freely.
Support for the PPI on a grant application starts from £3,500, which covers recruiting contributors, designing and facilitating the involvement, and writing it up in the form reviewers expect. Delivery PPIE for a funded study starts from £4,500, and longer involvement programmes running across a study from £8,500. Contributor payments at NIHR rates, recruitment, facilitation and reporting are all inside those figures. We can also help you cost the PPI line into the grant budget before you submit.
Yes. We work with research teams from grant development stage, helping to recruit the right PPI contributors, design appropriate involvement activities, facilitate advisory sessions, and document the involvement in a way that satisfies NIHR and ethics requirements. Early-stage support is often more valuable than bringing in PPIE specialists after a protocol is finalised. Get in touch to discuss your study.
NIHR PPI requirements relate to the quality and depth of patient involvement across the research programme. Ethics committee requirements (NHS Research Ethics Committees, HRA) focus more specifically on whether the research design is ethical and whether informed consent processes are appropriate; they also expect to see evidence of PPI in study design, particularly in the review of participant materials. Both require documented evidence of involvement; both assess quality, not just the presence of a tick-box statement. Studies funded by NIHR must satisfy both sets of requirements.
A strong PPI section for an NIHR grant describes: (1) how patients and the public were involved in developing the application itself (not just that you plan to involve them); (2) who was involved, briefly described (not named, but characterised, e.g. 'two people with lived experience of type 2 diabetes'); (3) what they contributed and what changed as a result; (4) how PPI will be structured throughout the study (advisory group, steering committee lay members, materials review); (5) how contributors will be recruited, supported, and paid; and (6) how findings will be shared back with them. Vague statements about 'consulting with patients' are routinely criticised by reviewers.
NHS England's co-production framework sets out the principles for involving patients, carers, and communities as equal partners in designing, delivering, and evaluating health and care services. Co-production goes beyond consultation: communities and services work together to identify problems and develop solutions. The framework is built on principles of equality, diversity, partnership, and shared power. Integrated Care Boards and NHS trusts are expected to embed co-production in their commissioning and service development work.
We fully recognise the effort your team invested in recruitment, moderation, and analysis, and we genuinely appreciate the quality of the discussions and reporting.
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