PPIE is the practice of involving patients, carers, and members of the public as active contributors to the research process.
PPIE is different from recruiting people as study participants. Involvement is when patients, carers, or the public contribute advice or feedback to shape the research; if they are simply providing data for analysis, they are research participants.
It’s also worth noting that PPIE is not a single fixed approach. It exists on a spectrum, and different types of involvement suit different projects and communities:
- Involvement means members of the public are actively involved in, contribute to, and influence the research process. This includes setting the research questions, designing studies, reviewing study materials, sitting on advisory groups, or helping interpret findings. In other words, the research is done with them.
- Engagement is broader and more outward-facing, and it includes sharing research findings with the public, raising public awareness, and opening dialogue about research priorities.
Understanding which type of PPIE is appropriate for your project is one of the first and most important planning decisions you will make.
PPIE serves a range of important purposes. It improves research design by bringing in an external viewpoint from the people your work actually concerns, surfacing assumptions and blind spots that are not obvious from within academia. It also helps researchers identify clinical and social needs more accurately, improves relevance, and makes research more accessible and inclusive. PPIE directs dissemination towards the communities where findings will be most valuable, rather than confining research results to journals that those communities may never read.
Common terms you may encounter include public involvement (PI), public and patient involvement (PPI), and community engagement and involvement (CEI), all widely used in the UK. In Canada, the equivalent is most often called patient engagement or patient-oriented research. In Australia, consumer and community involvement (CCI) and consumer engagement are standard terms. In the US, it is called community engagement.
As early as possible, ideally before you finalise your grant application or research proposal. The most meaningful PPIE happens when community input can still genuinely shape what you study and how you study it. In practice, this means involving people at the prioritisation and planning stage, and continuing through design, conduct, analysis, and dissemination.
There are various ways to involve the public in your work:
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Consultation/community engagement meetings – useful for gathering input at specific points in the research process, such as helping prioritise research questions or review plain-language materials.
- Workshops with experts-by-experience – good for generating discussion, sense-checking assumptions, and exploring community perspectives on research design or findings.
- Public steering groups – for when you want ongoing advisory input from the community your work focuses on. This is one of the most common and well-regarded forms of PPIE in practice.
- Peer or lived-experience researchers – particularly valuable when working with communities that may be less trusting of outside researchers. Having people from within the community, or with lived experience of the disease/condition, operating on the research side of a project can make their peers significantly more comfortable in participating.
- Co-applicants – where a member of the public is a formal member of the research team from the outset, with equal standing as a member of the core research team in decision-making.
Start with organisations that already have established trust with the communities relevant to your research. NGOs, social service centres, mutual aid committees, religious organisations, and ethnic minority support groups are all realistic starting points in Hong Kong.
It can add time at certain stages, particularly at the beginning, if you’re building new community relationships from scratch. However, well-planned PPIE tends to save time later by helping you reach the target communities more successfully. PPIE can minimise recruitment problems and improve the quality of public-facing materials and research designs. The key is to plan and budget for it properly rather than treating it as an add-on.
Include it as a legitimate and itemised line from the start, not as an afterthought. Costs that you will need to budget for typically include contributor honoraria, travel reimbursement, accessible and appropriate meeting venues, catering where relevant, training for contributors or research team members, and potentially a facilitator for community liaison if your project involves underserved or marginalised communities. You can contact FHSS-CTU for payment guidelines.
PPIE activities are considered advisory, rather than as research activities involving participants – therefore, ethical approval is not required. In your ethics application, it is good practice to acknowledge any input from PPIE members into research design, conduct, and dissemination.
If you are uncertain about where your planned activities fall, contact the CTU PPIE sub-committee.
Document it from the beginning, not retrospectively. Keep a clear record of how community input was sought, what was discussed, what changed as a result, and what didn’t change and why. When writing up your PPIE for grant reports or publications, be specific rather than vague. Describe who was involved, at what stage, and what concretely shifted in your research design or dissemination plan as a result of their input. There are some established guidelines/toolkits for consideration, such as the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) checklist.
