Frequently Asked Questions about PPIE for the Public | Faculty of Health and Social Sciences

Your lived experience is a valuable form of expertise. Our faculty would like to work with members of the public, including but not limited to patients, family caregivers, and health service users/consumers, together with a wider group of key stakeholders such as educators, community service users, health and social care professionals, representatives of community-based organisations, and policymakers across Hong Kong. Our aim is to make health and social science research better and more meaningful through Patient and Public Involvement and Engagement (PPIE). Here’s what PPIE is, how it works, and how you can get involved.

It’s a way for researchers and the public to work together as genuine partners. It means you can help shape research, from deciding what should be studied, to designing how studies are run, to helping with carrying out the research, to making sure results are interpreted and shared in ways that are clear and actually useful. It’s not about being studied, but about being part of the process.

A research participant is recruited to take part in a study. You might fill out surveys, receive a treatment intervention, take part in a focus group, or be interviewed as part of data collection to answer a research question. Your experiences are the subject of the research.

A public contributor is a person with lived experience of a health condition or who is caring closely for a family member with the health condition. You help shape, guide, and advise on the research itself. You bring your experience and insights to suggest topics, help design the study, make materials clearer, reach the right communities, or help interpret what the findings actually mean – making you a collaborator, not just a source of data.

It varies, and different activities fit different preferences and schedules. You might review plain-language summaries of research, join a project advisory group, help design a questionnaire, advise on how to reach a particular community, or work with researchers to share findings at a community event. No two projects are exactly the same.

No to both. Your lived experience is what matters here. You don’t need any prior experience of research to contribute meaningfully. The academic setting can feel unfamiliar, but we want to make sure that’s never a reason someone feels they can’t be involved.

It’s flexible and always your choice. You should always be given clear information about the time expectation before you agree to anything, and you will only be asked to commit to what has been agreed.

You will receive a full introduction to the project, clear information about your role, and ongoing support from the research team throughout the project. Training is often provided to help you feel confident, and meetings are designed to be welcoming and accessible.

Yes, your personal information will be handled in accordance with PolyU’s privacy policy. Before you begin, we will explain clearly what information we need, why we need it, and who will have access to it. You may be asked to sign a simple agreement form outlining mutual expectations (including payment, travel expenses, agreed commitments, etc.), so that there is a clear written record of what you’ve agreed to and what you haven’t. You are free to withdraw at any time without giving a reason.

It depends on the role and you should always ask upfront. If you join an advisory group, researchers may want to acknowledge your contribution. However, nothing should happen without your consent. If anonymity matters to you, say so early and the responsible research team will find a way to accommodate that.

Quite a lot! Many public contributors find that being involved in research gives them a new perspective on issues they care about, builds their confidence, and connects them with researchers and other community members who share their interests. You also gain a real understanding of how research works – knowledge that many people find genuinely useful. In addition, you will receive payment or reimbursement (for example, for travel expenses) in recognition of your contribution. There is also the satisfaction of having your experience shape work that could benefit your community and peers.

Please check out our FHSS-CTU PPIE website for PPIE opportunities with our faculty. If you represent or are a member of a patient/community group and would like to explore a partnership, we warmly welcome that conversation. Please get in touch with us at fhss.ctu@polyu.edu.hk.