Plan PPIE for your project

This how-to walks you through planning and running Patient and Public Involvement and Engagement (PPIE) across the phases of a research or development project. It assumes you already know what PPIE is; see Understanding Patient and Public Involvement and Engagement (PPIE) for the concepts and terminology.

Before you start

Apply these principles throughout every phase below:

Avoid tokenism. Do not involve only one representative, invite a patient to a meeting without asking them to speak, collect feedback without using it, or leave stakeholders uncompensated. Instead, involve a diverse group of stakeholders, integrate their contributions meaningfully into research decisions, and make sure feedback leads to change.
Clarify roles. Define whether individuals are advisors, co-researchers, or representatives of organisations.
Strive for inclusivity. Actively recruit diverse, gender-balanced voices (for example rare disease patients, caregivers, underrepresented groups) and consider further aspects such as age or socioeconomic status.
Ensure transparency. Be clear about expectations, time commitments, and the impact of involvement. Clarify how input will be used, compensate stakeholders, specify documented contributions, and keep everyone informed.
Plan with flexibility. Adapt methods to stakeholders’ needs, such as session length, virtual meeting design, or simple language.
Plan sufficient resources. PPIE is not data collection — it requires ethical considerations and dedicated resources. Consider country-specific PPIE requirements and PPIE-specific funding opportunities.

Clarify and set priorities

Define why PPIE should be integrated into your project and what it means for it. Establish the purpose, the ethical and legal framework, and the competence you need.

Ask yourself:

What do we hope to achieve through PPIE (for example relevance, accessibility, bias reduction)?
Which additional training, external expertise, or contacts to PPIE stakeholders do we need?
Which ethical and accessibility aspects should be considered?

Produce a PPIE purpose statement, an ethical and consent form, and a PPIE requirements plan for the project.

Design the research and development process

Decide how PPIE stakeholders will shape your research and development (R&D) process, and design inclusive tools that can represent diverse PPIE perspectives.

Ask yourself:

Who are the PPIE stakeholders involved (patients and former patients, carers and families, people with lived experience of a condition, communities and patient organisations), considering diversity criteria such as gender, age, and socioeconomic background?
What level of involvement will PPIE stakeholders have — being informed, being asked for feedback, having concerns and aspirations regarded, being involved in collaborative decision-making, or being fully empowered to make decisions that are followed?
What level of influence will PPIE stakeholders have — advisory, decision-making, or co-leadership?
Will PPIE stakeholders be enabled to join the process at different stages? Which flexibility can be offered?

Produce an agreement of tasks and roles, an information leaflet for contributing PPIE stakeholders, and an R&D design written in language understandable for all stakeholders involved.

Conduct the R&D project

Carry out the R&D project inclusively, sensitive to the diversity and ability of PPIE researchers and patients.

Ask yourself:

To what extent are PPIE stakeholders involved in the R&D process?
What resources are needed for inclusiveness and accessibility (for example screen readers, large print)?

Produce PPIE stakeholder engagement documentation (workshop notes, feedback logs, stakeholder contact maps) and co-designed research materials (revised study protocols, adapted data collection tools, ethical considerations document).

Analyse and interpret the results

Involve PPIE stakeholders in interpreting your results, so the R&D outcomes cover PPIE perspectives.

Ask yourself:

Which alternative interpretations are possible from a PPIE perspective?
Which variables might have biased or distorted the results? Which obstacles occurred?
How can the results be applied in practice — for whom, in which use cases, and who does not benefit?

Produce summaries of possible interpretations and implications, a summary of limitations, and a feedback or feasibility report.

Disseminate your results

Communicate results internally and externally, inform stakeholders and the broader public to create impact, co-create patient-friendly outputs, and consider follow-up actions.

Ask yourself:

How will we communicate results internally back to PPIE stakeholders?
Who should be targeted externally to increase impact (for example associations of doctors who make relevant decisions, political stakeholders)?
How can we design patient-friendly outputs (for example by including graphic designers or patient advocates)?
How are PPIE contributions to the project made visible?

Produce webinars or infographics co-created with patients for public audiences, lay summaries, and a dissemination plan (channels, timelines, responsible parties).

Evaluate the impact of PPIE

Measure whether PPIE added value to your project, and plan how to sustain its effects and engagement in future projects.

Ask yourself:

How did the input of the PPIE stakeholders shape the project?
Did the project raise awareness about the necessity of PPIE, publicly as well as within the research infrastructure?
What should be adapted or changed in further projects?
Which follow-up projects or organisations are taking up the research findings, and in which way?

Produce a PPIE impact report (for example changes in study design due to patient feedback), a lessons learned document for future projects, and any follow-up projects planned.